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Minority Adult Survivors of Childhood Cancer: A Comparison of Long-Term Outcomes, Health Care Utilization, and Health-Related Behaviors From the Childhood Cancer Survivor Study
Abstract
To determine the influence of race/ethnicity on outcomes in the Childhood Cancer Survivor Study (CCSS).
Of CCSS adult survivors in the United States, 443 (4.9%) were black, 503 (5.6%) were Hispanic and 7,821 (86.6%) were white. Mean age at interview, 26.9 years (range, 18 to 48 years); mean follow-up, 17.2 years (range, 8.7 to 28.4 years). Late mortality, second malignancy (SMN) rates, health care utilization, and health status and behaviors were assessed for blacks and Hispanics and compared with white survivors.
Late mortality rate (6.5%) and 15-year cumulative incidence of SMN (3.5%) were similar across racial/ethnic groups. Minority survivors were more likely to have lower socioeconomic status (SES); final models were adjusted for income, education, and health insurance. Although overall health status was similar, black survivors were less likely to report adverse mental health (females: odds ratio [OR], 0.6; 95% CI, 0.4 to 0.9; males: OR, 0.5; 95% CI, 0.3 to 0.8). Differences in health care utilization and behaviors noted: Hispanic survivors were more likely to report a cancer center visit (females: OR, 1.5; 95% CI, 1.1 to 2.0; males: OR, 1.7; 95% CI, 1.2 to 2.3); black females were more likely (OR, 1.6; 95% CI, 1.1 to 2.4), and Hispanic females less likely to have a recent Pap smear (OR, 0.7; 95% CI, 0.5 to 1.0); black and Hispanic survivors were less likely to report smoking; black survivors were less likely to report problem drinking.
Adjusted for SES, adverse outcomes in CCSS were not associated with minority status. Importantly, black survivors reported less risky behaviors and better preventive practices. Hispanic survivors had equitable access to cancer related care.
... An extensive literature demonstrates that children and young people (CYP) with long-term physical health conditions (pLTCs) experience approximately a fourfold greater risk of psychopathology compared to the general population of CYP [1][2][3][4][5][6][7][8][9][10][11][12]. Our previous research with the 2004 British Child and Adolescent Mental Health Survey (BCAMHS) demonstrated that compared to children without a LTC, CYP with any LTC had higher SDQ total difficulties scores at baseline (adjusted mean difference 1.4, 1.1-1.6) ...
... Age and sex [3,4] differences in the risk of psychopathology have been reported in meta-analyses of cross-sectional studies involving CYP with different pLTCs. In a large-scale, cross-sectional study carried out in childhood cancer survivors, Black ethnicity was associated with better mental health outcomes after adjusting for socioeconomic status [5]. Another cross-sectional study in children with cancer reported that those with longer hospital admissions had more post-traumatic symptoms [6], and post-traumatic symptoms were correlated with poorer self-reported family functioning in a recent metaanalysis including CYP with different pLTCs [7]. ...
... Although informative, previous studies in CYP with pLTCs are often limited by their cross-sectional design [5,6,8,9], the inclusion of small, clinical samples [6,8,9] that are likely to comprise the most severely affected CYP, and the application of self-reported questionnaire-based data [5,6,8,9] rather than standardised diagnostic assessments of mental health. ...
Children and young people (CYP) with long-term physical health conditions (pLTCs) have increased risk of psychopathology compared to physically healthier peers. We explored risk factors for new onset and persistent psychiatric disorders in CYP with pLTCs compared to CYP without pLTCs. This 3-year follow-up study involved a UK representative sample of CYP from the British Child and Adolescent Mental Health Surveys (N = 7804). We examined potential baseline predictors of new onset and persistent psychiatric disorders at follow-up in four groups of children based on the presence of any physical and/or any psychiatric conditions at baseline. Psychiatric disorders were assessed using standardised multi-informant diagnostic assessment. Separate multivariable binary logistic regressions were conducted for each group. In CYP with pLTCs, rented housing (aOR = 1.42, 95% CI 1.01 to 1.99), non-traditional family structure (aOR = 2.08, 95% CI 1.42 to 3.05), increased parental distress (aOR = 1.09, 95% CI 1.04 to 1.14), and greater peer relationship difficulties (aOR = 1.29, 95% CI 1.19 to 1.39) predicted future psychiatric disorder. Only peer relationship difficulties predicted persistent disorder (aOR = 1.27, 95% CI 1.17 to 1.38) in this group. A greater number of factors predicted the onset of psychiatric disorder in CYP with pLTCs compared to physically healthier peers and similarly, a higher number of factors predicted persistent disorder in CYP without pLTCs. CYP with pLTCs might comprise a group with different vulnerabilities, some of which are potentially tractable and may be useful indicators of patients who require preventable or management interventions.
... Five articles reported racial/ethnic disparities in healthcare utilization ( Table 2). The type of healthcare utilization disparities reported for non-Hispanic Black survivors included general medical contact (26) and an initial survivorship visit (28). The type of healthcare utilization disparities reported for Hispanic survivors included general medical contact (26), a cancer center visit (26), the use of follow-up care (35), health-care selfefficacy, defined as perceived control and confidence in managing healthcare (36), and seeking information from a hospital (37) or from family members (37). ...
... The type of healthcare utilization disparities reported for non-Hispanic Black survivors included general medical contact (26) and an initial survivorship visit (28). The type of healthcare utilization disparities reported for Hispanic survivors included general medical contact (26), a cancer center visit (26), the use of follow-up care (35), health-care selfefficacy, defined as perceived control and confidence in managing healthcare (36), and seeking information from a hospital (37) or from family members (37). Across the articles, risk modulators included in analytic models for healthcare utilization disparities included clinical factors (diagnosis, treatment), individual characteristics (age, sex, depressive symptoms, post-traumatic growth, self-efficacy), individual-/family-level SES (educational attainment, household income, health insurance coverage), and social/contextual factors (support, family influence). ...
... In two articles, inclusion of individual characteristics and individual-/family-level SES in multivariable modeling attenuated the statistical significance for racial/ethnic disparities in healthcare utilization. Specifically, in an odds-ratio model, inclusion of individual-level and family-level SES and individual characteristics (cancer diagnosis and age at the time of study) removed statistical significance of the disparity in general medical contact among non-Hispanic Black male survivors (26). Similarly, inclusion of age, sex, and individual-level SES (i.e., health insurance) removed the statistical significance for receiving less cancer-related information from family members among Hispanic survivors (37). ...
The five-year survival rate of childhood cancer has increased substantially over the past 50 yr; however, racial/ethnic disparities in health outcomes of survival have not been systematically reviewed. This scoping review summarized health disparities between racial/ethnic minorities (specifically non-Hispanic Black and Hispanic) and non-Hispanic White childhood cancer survivors, and elucidated factors that may explain disparities in health outcomes. We used the terms “race”, “ethnicity”, “childhood cancer”, “pediatric cancer”, and “survivor” to search the title and abstract for the articles published in PubMed and Scopus from inception to February 2021. After removing duplicates, 189 articles were screened, and 23 empirical articles were included in this review study. All study populations were from North America, and the mean distribution of race/ethnicity was 6.9% for non-Hispanic Black and 4.5% for Hispanic. Health outcomes were categorized as healthcare utilization, patient-reported outcomes, chronic health conditions, and survival status. We found robust evidence of racial/ethnic disparities over four domains of health outcomes. However, health disparities were explained by clinical factors (e.g., diagnosis, treatment), demographic (e.g., age, sex), individual-level socioeconomic status (SES; e.g., educational attainment, personal income, health insurance coverage), family-level SES (e.g., family income, parent educational attainment), neighborhood-level SES (e.g., geographic location), and lifestyle health risk (e.g., cardiovascular risk) in some but not all articles. We discuss the importance of collecting comprehensive social determinants of racial/ethnic disparities inclusive of individual-level, family-level, and neighborhood-level SES. We suggest integrating these variables into healthcare systems (e.g., electronic health records), and utilizing information technology and analytics to better understand the disparity gap for racial/ethnic minorities of childhood cancer survivors. Furthermore, we suggest national and local efforts to close the gap through improving health insurance access, education and transportation aid, racial-culture-specific social learning interventions, and diversity informed training.
... Castellino and colleagues reported that both Black and Hispanic CCS were less likely to smoke than their NHW counterparts and Black survivors were less likely to report alcohol abuse. 11 With only a small population of Black (4.9%) and Hispanic (5.6%) survivors, these results are difficult to generalize into a broader minority population. Another study focused on the health behaviors of minority CCS in comparison with age-matched controls. ...
... Covariates selected included household income to capture socioeconomic status (SES) and gender based on previous research. [6][7][8]11,13,18,24,25 Insurance status was not included because of a low frequency of uninsured CCS, thus not appropriate for multivariable logistic regression models. Education was also excluded because it was highly correlated with age group and there was concern for collinearity in our regression model. ...
... The participant number was small and came from a single institution in California, primarily consisting of Mexican-American heritage, making results difficult to generalize to the national Hispanic population. The low frequency of reported substance use among Hispanic CCS, although consistent with previous literature,11,18 may indicate that our study is underpowered to detect ethnic group differences. There is also a possible selection and self-report bias. ...
Objective:
The aim of this study was to examine the associations between age and ethnicity on the development of substance use behaviors among Hispanic and non-Hispanic White (NHW) adolescent and young adult (AYA) childhood cancer survivors.
Methods:
Participants were recruited from a single institution through the CHOC Children's Hospital Cancer Registry and included 55 Hispanic and 61 NHW AYA childhood cancer survivors, ages 12-33 years (Mean age ± SD: 19 ± 4.2). Smoking, alcohol, and drug use were measured using the Child Health Illness Profile- Adolescent Edition (CHIP-AE).
Results:
Hispanic AYA survivors were less likely to be medically insured and reported lower household income than their NHW counterparts (p <0.001, p <0.001, respectively). After controlling for socioeconomic differences and gender, age and ethnicity were significant predictors of substance use among AYA survivors. Hispanic survivors reported less lifetime use of cigarette smoking compared to NHW survivors (OR 0.17, 95% CI, 0.03-0.80). Older age, for both Hispanic and NHW survivors, was found to be a risk factor for lifetime substance use and current alcohol/hard liquor consumption and binge drinking (p <0.05).
Conclusions:
Young adult childhood cancer survivors and NHW survivors are at greatest risk for developing substance use behaviors. The frequency of substance use among AYA survivors appears to increase as they transition into adulthood. These findings emphasize the need to improve long-term health behavior screening and develop effective interventions on reducing substance use behaviors in this vulnerable population.
... To date, only the Childhood Cancer Survivors Study (CCSS) has considered the health behaviors of African-American and Hispanic survivors. 9,10 Within CCSS, African-Americans and Hispanics were less likely than whites to smoke, and African-Americans were less likely than Hispanics or Whites to drink alcohol heavily. All groups had high rates of physical inactivity. ...
... 8 Healthy lifestyles decrease risk and enhance overall health and quality of life. Studies with predominantly white samples report that, with the exception of smoking (which tends to be lower), 3,9,20 survivors and controls practice similar health behaviors. [2][3][4] The Chicago Healthy Living Study extends this literature by examining BMI and health behaviors among minority survivors. ...
... Although Castellino et al. found no evidence for higher rates of late mortality or second malignant neoplasms among minority survivors compared to whites, survivors were young and may not have yet faced the chronic health problems that disproportionately impact their communities. 9 Findings that survivors practice behaviors similar to their peers, despite their cancer history, suggest that their disease burden may be further amplified. Longitudinal studies will provide insight into this hypothesis. ...
BACKGROUND
Available data have suggested that childhood cancer survivors (CCSs) are comparable to the general population with regard to many lifestyle parameters. However, to the authors' knowledge, little is known regarding minority CCSs. This cross-sectional study describes and compares the body mass index and health behaviors of African American, Hispanic, and white survivors with each other and with noncancer controls.METHODS
Participants included 452 adult CCSs (150 African American, 152 Hispanic, and 150 white individuals) recruited through 4 childhood cancer treating institutions and 375 ethnically matched noncancer controls (125 in each racial/ethnic group) recruited via targeted digit dial. All participants completed a 2-hour in-person interview.RESULTSSurvivors and noncancer controls reported similar health behaviors. Within survivors, smoking and physical activity were found to be similar across racial/ethnic groups. African American and Hispanic survivors reported lower daily alcohol use compared with white individuals, but consumed unhealthy diets and were more likely to be obese.CONCLUSIONS
This unique study highlights that many minority CCSs exhibit lifestyle profiles that contribute to an increased risk of chronic diseases and late effects. Recommendations for behavior changes must consider the social and cultural context in which minority survivors may live. Cancer 2015. © 2015 American Cancer Society.
... Previous studies indicate that many survivors do not engage in regular exercise (12)(13)(14); some studies report that less than 50% of cancer survivors meet recommended guidelines for physical activity (15)(16)(17). Factors associated with inactivity include female sex (13,18), Hispanic ethnicity (19), and prior therapy with cranial radiation (15). In addition, psychologic and somatic symptoms, including anxiety, fatigue, low stamina, and cancer-related pain, are also associated with reduced likelihood to participate in exercise (20). ...
... Independent variables were selected on the basis of findings from cross-sectional studies that reported characteristics of childhood cancer survivors with reduced levels of physical activity or exercise (13,15,19). Factors with the potential for change over time utilized information up to or at the time of the Follow-up 2 questionnaire (study 14 (29,30). ...
... Although previous studies carried out among CCSS participants have identified factors associated with low physical activity in cross-sectional analyses (13,15,18,19), this study is among the first to evaluate factors that predict declining levels of physical activity among survivors of childhood cancer as they age. In this study, approximately 19% of survivors and 18% of siblings reported declining activity levels over a 4-year period, such that by the end of the study interval, 48% of survivors and 42% of siblings did not meet CDC guidelines for physical activity. ...
Background:
We aimed to identify demographic and health-related predictors of declining physical activity levels over a four-year period among participants in the Childhood Cancer Survivor Study.
Methods:
Analyses included 7,287 ≥5-year childhood cancer survivors and 2,107 siblings who completed multiple follow-up questionnaires. Participants were classified as active if they met the Centers for Disease Control and Prevention guidelines for physical activity. Generalized linear models were used to compare participants whose physical activity levels declined from active to inactive over the study to those who remained active. In addition, selected chronic conditions (CTCAE v4.03 Grade 3 and 4) were evaluated as risk factors in an analysis limited to survivors only.
Results:
The median age at last follow-up among survivors and siblings was 36 (range, 21-58) and 38 (range, 21-62) years, respectively. The rate of decline did not accelerate over time among survivors when compared with siblings. Factors that predicted declining activity included body mass index ≥30 kg/m(2) [RR = 1.32; 95% confidence interval (CI), 1.19-1.46, P < 0.01], not completing high school (RR = 1.31; 95% CI, 1.08-1.60, P < 0.01), and female sex (RR = 1.33; 95% CI, 1.22-1.44, P < 0.01). Declining physical activity levels were associated with the presence of chronic musculoskeletal conditions (P = 0.034), but not with the presence of cardiac (P = 0.10), respiratory (P = 0.92), or neurologic conditions (P = 0.21).
Conclusions:
Interventions designed to maximize physical activity should target female, obese, and less educated survivors. Survivors with chronic musculoskeletal conditions should be monitored, counseled, and/or referred for physical therapy.
Impact:
Clinicians should be aware of low activity levels among subpopulations of childhood cancer survivors, which may heighten their risk for chronic illness.
... Thus, most of our current understanding has been gleaned from analyses of largely Caucasian populations, and there is practically nothing published about the prevalence of adverse health behaviors among AYASCC of AA or NHOPI ancestry. 7,18,21,22 This study was undertaken to help bridge information gaps about AA and NHOPI AYASCC in Hawai'i, specifically to see if they had a higher prevalence of selected adverse health behaviors than similarly aged representative samples from Hawai'i and across the United States. 6,9,11,23 Methods ...
... However, our results appear consistent with previous CCSS findings with respect to smoking in ethnic minority (Hispanic and Black) adult survivors of childhood cancer. 21 Also, our >18 year old AYASCC sample had much lower smoking rates than similarly aged AYASCC in two large studies-the CCSS and COG. 10,11 Reported drinking rates were significantly lower among both of our AYASCC samples compared to BRFSS data from national samples and previous AYASCC samples. ...
... 10,11 Reported drinking rates were significantly lower among both of our AYASCC samples compared to BRFSS data from national samples and previous AYASCC samples. 10,21 The levels of inactivity in the Hawai'i AYASCC were comparable to several previous findings for AYASCC, 7,11 but not as high as the 70-80% rates of inactivity reported in other studies. 33,34 Thus, for several behavioral risk factors, including tobacco, alcohol, and physical activity, the risks in our largely AA and NHOPI sample of AYASCC were lower than risks for their similarly aged non-cancer peers in Hawai'i, across the United States, and the largely white AYASCC samples in previously published reports. ...
Due to toxicities associated with their malignancies and treatments, adolescent and young adult survivors of childhood cancer (AYASCC) are at high risk for developing chronic diseases. This can be compounded by a greater prevalence of unhealthy behaviors relative to similarly aged non-cancer peers. Disparities in health behaviors have been noted for Black and Hispanic AYASCC, but data on Asian American (AA) or Native Hawaiian and Other Pacific Islander (NHOPI) minorities are lacking. The purpose of this study was to help bridge these information gaps by gathering data from Hawai'i AA and NHOPI AYSCC. Telephone surveys were used to collect health behavior data from survivors 13-24 years of age (N=64); 55% of the sample was female, 77% AA or NHOPI, 63% leukemia/lymphoma survivors, and 32% overweight/obese. These were compared to state/national survey data for similarly aged individuals (Youth Risk Behavior Surveillance System data for 13-17 year olds, and Behavioral Risk Factor Surveillance System data for 18-24 year olds). While Hawai'i AYASCC had significantly lower rates of tobacco/alcohol use, a higher proportion did not eat five fruits/vegetables a day (96%) compared to state (83%) and national (78%) samples (P < .001). Although many met age-specific physical activity recommendations, 44% of <18 year olds and 29% of ≥18 year olds still failed to meet national guidelines. Low intake of fruits/vegetables and suboptimal levels of physical activity place these vulnerable, ethnic minority cancer survivors at higher risk for chronic disease. These findings underscore the need to assess and advise survivors about their diet and exercise habits as part of post-treatment care.
... These studies suggest that adult Latino cancer survivors report greater pain, financial difficulties, fear of recurrence, fear of death, and in some cases lower life satisfaction compared to whites [24][25][26]. Although Latino children have the highest rates of some childhood cancers such as leukemia there are only a handful of published studies that examine the young adult survivors of these cancers [27][28][29][30][31]. The limited studies that examine health-related quality of life (HRQOL) and include cultural and ethnic minority young adult survivors of childhood cancer suggest that ethnic status may be associated with poorer psychosocial outcomes, and higher rates of emotional distress compared to their white counterparts [32,33]. ...
... The limited studies that examine health-related quality of life (HRQOL) and include cultural and ethnic minority young adult survivors of childhood cancer suggest that ethnic status may be associated with poorer psychosocial outcomes, and higher rates of emotional distress compared to their white counterparts [32,33]. One study found that adjusted for socioeconomic status (SES) adverse outcomes for survivors of childhood cancer were not affected by ethnic minority status, yet they also found that ethnic minority survivors were more likely than their peers to have lower SES [30]. Casillas et al. [27] used a mixed method design to uncover issues in measuring HRQOL in this population. ...
... For example, ensuring the entire extended family feels welcome as a part of the treatment process. Our findings reinforce previous results that suggest the importance of positive focus, familial support [27,29,31], and staff relationships [30] for Latino AYA survivors of childhood cancer [28]. The close relationships maintained with the medical team seemed to create a therapeutic alliance and trust in the medical system that was in contrast to adult Latino cancer survivors [25,54]. ...
The purpose of this study was to investigate the experience of surviving cancer for Latino adolescents and young adult (AYA) survivors of pediatric cancer.
Using a phenomenological approach, this study focused on the experience of cancer survivorship through in-depth interviews with 14 Latino AYA survivors (16-29 years) diagnosed as young children (0-15 years) and at least 1 year post-treatment RESULTS: Four essential themes about the Latino AYA experience as childhood cancer survivors emerged from analysis: borrowed strength of family and hospital staff; sustained positive attitude; perceived vulnerability; branded a cancer survivor. According to these participants, the lived experience of surviving cancer was predominately positive. These emerging adults were able to focus on the positive lessons learned from their cancer experience such as the importance of personal relationships and an optimistic outlook on life. Yet, it was clear that long after these survivors had been labeled "cured" by the medical team, cancer continued to be a large part of their existence.
The results indicate that these emerging adults faced their cancer experience with optimism, leaned on relationships with family and health care professionals, and demonstrated resilience through their cancer treatment and beyond.
This unique description of Latino survivors' experiences demonstrates that they simultaneously face uncertainty and identify positive influences of the cancer experience in particular unwavering familial support. These findings provide opportunities for health care providers to better understand this rapidly growing population and to create culturally resonant programs that can promote their long-term health and well being.
... (Robison et al. 2009). Additional questions query the date of each hospitalization, which are of widespread interest for potential insights into survivor morbidity, healthcare utilization, economic models, health disparities research, and many other topics (Castellino et al. 2005;Casillas et al. 2011;Kurt et al. 2012;Mueller et al. 2018). ...
... Estimation and comparison of hospitalization rates is also a common tool for studies investigating the effectiveness of health insurance plans, new legislation, and other policy initiatives (Kirchhoff et al. 2014;Mueller et al. 2018). Similar goals are pursued in the analyses of health disparities among different ethnicities, proposals of new intervention strategies, and a variety of other work related to treatment and management of childhood cancer survivors (Castellino et al. 2005;Rosenberg et al. 2015). ...
In modern biomedical datasets, it is common for recurrent outcomes data to be collected in an incomplete manner. More specifically, information on recurrent events is routinely recorded as a mixture of recurrent event data, panel count data, and panel binary data; we refer to this structure as general mixed recurrent event data. Although the aforementioned data types are individually well-studied, there does not appear to exist an established approach for regression analysis of the three component combination. Often, ad-hoc measures such as imputation or discarding of data are used to homogenize records prior to the analysis, but such measures lead to obvious concerns regarding robustness, loss of efficiency, and other issues. This work proposes a maximum likelihood regression estimation procedure for the combination of general mixed recurrent event data and establishes the asymptotic properties of the proposed estimators. In addition, we generalize the approach to allow for the existence of terminal events, a common complicating feature in recurrent event analysis. Numerical studies and application to the Childhood Cancer Survivor Study suggest that the proposed procedures work well in practical situations.
... 49,70,74,84,85 PTSD also in particular was more common in female survivors. 52 A large scale study covering a diverse ethnic population found that after adjustment for socioeconomic status, black survivors were less likely to report adverse mental health than white or Hispanic survivors, 86 although no non-cancer controls were used in this study. ...
... Higher risk of mental health problems in patients treated with anthracyclines 38 may be due to the significant LEs often seen in these patients, particularly cardiomyopathy and congestive cardiac failure, 100 and the association between chronic illness and poor mental health. 67,86 The anthracycline dose associated with increased risk of cardiotoxicity (>300 mg/m 2 ) is the same as the dose associated with increased mental distress, 101 which adds further weight to this theory. ...
Childhood cancer is increasing in prevalence whilst survival rates are improving. The prevalence of adult survivors of childhood cancer is consequently increasing. Many survivors suffer long-term consequences of their cancer treatment. Whilst many of these are well documented, relatively little is known about the mental health of survivors of childhood cancer. This article aimed to describe the prevalence and spectrum of mental health problems found in adult survivors of childhood cancer using a systematic review methodology. Our review included 67 papers, describing a number of problems, including depression, anxiety, behavioural problems and drug misuse. Factors increasing the likelihood of mental health problems included treatment with high dose anthracyclines, cranial irradiation, diagnoses of sarcoma or central nervous system tumours and ongoing physical ill health. There were numerous limitations to the studies we found, including use of siblings of survivors as a control group, self-report methodology and lack of indications for prescriptions when prescribing data was used. This review has identified many mental health problems experienced by survivors of childhood cancer, however the exact incidence, prevalence and risk-factors for their development remain unclear. Further work to identify childhood cancer patients who are at risk of developing late mental health morbidity is essential. This article is protected by copyright. All rights reserved.
... [19][20][21] For CCS, the role of ethnic/racial differences in follow-up care is less clear. 22,23 According to the Institute of Medicine report, 4 The purpose of this study, entitled "Project Forward", was to identify risk and protective factors for use of cancer related follow-up care among recently treated Hispanic and non-Hispanic adolescent and young adult CCS. We applied a systems-level approach to the study, assessing factors at patient, family, and healthcare system levels ( Figure 1). ...
... This rapid drop in healthcare utilization during emerging adulthood is likely related to challenges of assuming new adult roles. 25 These results are consistent with other findings among late adolescent and emerging adult CCS (ages [16][17][18][19][20][21][22][23][24][25][26][27][28][29], where only 35% recognized their potential for serious health problems related to their cancer treatment and over 50% were not seeking cancer related follow-up care. 5 Thus, specialized clinics and broader education efforts focused on CCS transitioning from pediatric to adult care settings may help prevent this decline in follow-up care. ...
BACKGROUND
Follow-up care is critical for childhood cancer survivors (CCS), who are at high risk for comorbidities and late effects of cancer treatments. Understanding the factors associated with maintaining follow-up care is needed, especially for Hispanic CCS, who have been under-represented in previous studies.METHODS
Risk factors and protective factors for receiving cancer-related follow-up care were examined among 193 Los Angeles County CCS diagnosed between 2000 and 2007 (54% Hispanic; mean ± standard deviation age, 19.9 ± 2.8 years; age at diagnosis, 12.1 ± 3.0 years; time since diagnosis, 7.8 ± 2.0 years). Self-report surveys were used to assess follow-up care, insurance status, demographics, clinical factors, and psychosocial risk (eg, depression) and protective (eg, self-efficacy [SE]) factors. Multivariable logistic regression was used to identify factors associated with the previous receipt of cancer-related follow-up care (in prior 2 years) and the intent to seek future cancer-related follow-up care.RESULTSSeventy-three percent of CCS reported a cancer follow-up visit in the previous 2 years, which was positively associated (P < .05) with having health insurance, white ethnicity (vs Hispanic), younger age, and greater treatment intensity. Sixty-nine percent reported an intent to receive follow-up care in the next 2 years, which was positively associated (P < .05) with having health insurance and greater SE.CONCLUSIONS
Hispanics and older CCS were more likely to lack previous follow-up care. Because health insurance was strongly associated with both previous follow-up care and the intent to seek care, the current results indicate that recent changes in health coverage may improve follow-up among CCS. Interventions targeting improved SE may help increase intent to receive follow-up care for this population. Cancer 2014. © 2014 American Cancer Society.
... Coordinated follow-up services are not, however, universally available across Canada (Guilcher, Fitzgerald & Pritchard, 2009;Shaw et al., 2006). Because individual cancer centers implement local policies on follow-up care, not all cancer survivors are offered or attend routine follow-up (Castellino et al., 2005;Nathan et al., 2009). Comprehensive, evidence-based policies for the longitudinal care of survivors are needed so that there will be consistency across the country as to what long-term follow-up care is needed, who delivers it, where, how and how often. ...
... Despite the potential benefits of long-term follow-up, recent studies show that as many as 60% of cancer survivors report receiving no regular medical follow-up (Arvidson et al., 2006;Earle & Neville, 2004;Nathan et al., 2009;Nord et al., 2005;Shaw et al., 2006). Cancer survivors receiving medical care typically visit a general practitioner (GP) rather than an oncologist for care that is neither related to cancer survivors" cancer history nor the specific risks arising from their cancer (Castellino et al., 2005;Nathan et al., 2009). Self-reported healthcare use may, however, underestimate the true prevalence given that audits of administrative databases and chart reviews suggest that nearly 90% of cancer survivors attend follow-up cancer clinics . ...
... Factors associated with not reporting any outpatient medical care included having no health insurance, being male, having a lack of concern for future health, and being 30 years or older (Oeffinger et al., 2004). Notably, results of a recent investigation regarding the influence of race/ethnicity on outcomes in the CCSS revealed that, although overall health status was similar, African-American survivors were less likely to report adverse mental health, risky behaviors (e.g., smoking, problem drinking), and better preventive practices, while Hispanic survivors demonstrated equitable access to cancer-related care (Castellino et al., 2005). Thus, it would appear that, adjusted for socioeconomic status, adverse outcomes in the CCSS are not associated with minority status (Castellino et al., 2005). ...
... Notably, results of a recent investigation regarding the influence of race/ethnicity on outcomes in the CCSS revealed that, although overall health status was similar, African-American survivors were less likely to report adverse mental health, risky behaviors (e.g., smoking, problem drinking), and better preventive practices, while Hispanic survivors demonstrated equitable access to cancer-related care (Castellino et al., 2005). Thus, it would appear that, adjusted for socioeconomic status, adverse outcomes in the CCSS are not associated with minority status (Castellino et al., 2005). ...
... Information regarding lifestyle behaviors of minority survivors assumes even greater importance given the risk of comorbid conditions among Hispanics and blacks. Very few groups have examined minorities and their outcomes after cancer survival [8]. With a better understanding of this population, interventions may be put in place to help reduce disease burden for all survivors [9]. ...
... Very few other studies have examined the diet and lifestyle factors of survivors by race. To the current researcher's knowledge, Castellino et al. [8] is the only other group that has focused specifically on comparing the outcomes of survivors across races and ethnicities. Health outcomes, health-care use, and lifestyle behaviors were compared among 443 black, 503 Hispanic, and 7,821 white survivors from the CCSS. ...
Purpose
The objective of this study was to assess adherence of childhood cancer survivors in comparison to cancer-free adults of comparable age and sex (or “controls”) to the 2012 American Cancer Society (ACS) Guidelines on Nutrition and Physical Activity.
Methods
As part of the Chicago Healthy Living Study, 431 childhood cancer survivors (18.5 ± 8.1 years from diagnosis) and 361 controls completed a structured, health-focused interview including the Block Brief Food Frequency Questionnaire and Modifiable Activity Questionnaire. From these data, modified adherence scores were computed based on ACS guidelines (maximum score of 8 reflecting complete adherence). Comparisons were made between survivors and controls and among racial-ethnic groups of survivors and controls.
Results
There was no difference in overall ACS adherence scores between survivors and controls (4.3 ± 1.5 vs. 4.2 ± 1.5, p = 0.54). As compared to controls, survivors, on average, had a lower body mass index or BMI (27.9 ± 7.0 vs. 29.3 ± 7.8 kg/m2, p = 0.01) and consumed less fiber (9.2 ± 3.5 vs. 9.7 ± 3.8 g/1,000 kcal, p = 0.05). Within the survivor group, ACS adherence scores did not differ across racial-ethnic groups, but differences were observed with respect to component behaviors. Hispanic survivors had a higher BMI when compared to those of whites (29.2 ± 7.4 vs. 26.2 ± 5.3 kg/m2, p = 0.001). Daily alcohol consumption was greater for whites among both survivors and controls as compared to other racial-ethnic groups (p
... Presently, scant data are available regarding the effects of race, ethnicity, or other cultural identities upon the survivorship experience. However, examination of the Childhood Cancer Survivor Study-an extensive longitudinal research endeavor tracking more than 10,000 survivors of childhood cancers at 5 years+ in remission and their sibling controls [37]-showed that adjusting for socio-economic status did not affect health status or mortality rates across white, black, or Hispanic populations [38,39]. However, the original study reported (back in 2005) that minority cancer survivors were more likely to have lower socio-economic status, and when adjusting for income, education, and health insurance, Black survivors were less likely to report adverse mental health [37]. ...
Simple Summary
Despite advances in head and neck cancer control, survivors encounter significant difficulties accessing survivorship care in the USA. We conducted a qualitative study aimed to better understand their experiences and identify unmet needs. Fifteen long-term head and neck cancer survivors were interviewed, where themes around chronic emotional distress, fatigue, and disruptions in daily life emerged across the focus group. Secondary issues included sleep problems, cognitive difficulties, and other health conditions. Surprisingly, physical symptoms like pain and changes in appetite were less discussed. These findings underscore the need for tailored holistic multi-dimensional cancer survivorship programs that address physical, emotional, and spiritual well-being. The study highlights the importance of increased awareness and comprehensive long-term support to prioritize and enhance quality of life for the head and neck cancer survivorship community.
Abstract
Improved rates of cancer control have increased the head and neck cancer survivor population. Cancer survivorship clinics are not widely available in the USA, and longitudinal supportive care for patients undergoing multimodal therapy has not advanced at a pace commensurate with improvements in cancer control. Consequently, a large head and neck cancer survivor population whose quality of life may be chronically and/or permanently diminished presently exists. This lack of awareness perpetuates under-recognition and under-investigation, leaving survivors’ (mostly detrimental) experiences largely uncharted. We conducted a qualitative exploration of survivors’ experiences, aiming to unpack the profound impact of late systemic symptoms on daily life, encompassing work, relationships, and self-identity in the head and neck cancer survivor community. The study included 15 remitted head and neck survivors, ≥12 months from their final treatment, who participated in semi-structured interviews conducted by a medical oncologist. Data analysis comprised qualitative thematic analysis, specifically inductive hierarchical linear modeling, enriched by a deductive approach of anecdotal clinical reporting. Results highlighted that 43.36% of all quotation material discussed in the interviews pertained to chronic emotion disturbance with significant implications for other domains of life. A central symptom cluster comprised impairments in mood/emotions, daily activity, and significant fatigue. Dysfunction in sleep, other medical conditions, and cognitive deficits comprised a secondary cluster. Physical dysfunctionality, encompassing pain, appetite, and eating, and alterations in experienced body temperature, constituted a tertiary cluster, and perhaps were surprisingly the least discussed symptom burden among head and neck cancer survivors. Symptoms causing heightened long-term survivor burden may be considered epiphenomenal to central physical dysfunctionality, albeit being presently the least represented in cancer survivor care programs. Moving forward, the development of targeted and multi-dimensional treatment programs that encompass physical, psychosocial, and spiritual domains are needed to increase clinical specificity and effective holistic long-term solutions that will foster a more compassionate and informed future of care for the cancer survivorship community.
... The authors found that the experience of post-traumatic growth was lower among those who were Hispanic and primarily spoke English [11]. Furthermore, a systematic review of the mental health of long-term survivors of childhood cancer and young adult cancer identified one study with a large and representative sample showing ethnic differences in the mental health outcomes of AYAs, such that survivors that identified as Black experienced poorer mental health than those that identified as White or Hispanic [12,13]. Finally, there is some research with racial and ethnic minority survivors of young adult cancer that shows that, in spite of poor health outcomes, these individuals experience growth and positive change from their cancer experience [14]. ...
The psychosocial outcomes of adolescents and young adults (AYAs) diagnosed with cancer are poorer compared to their peers without cancer. However, AYAs with cancer from diverse racial and ethnic groups have been under-represented in research, which contributes to an incomplete understanding of the psychosocial outcomes of all AYAs with cancer. This paper evaluated the racial and ethnic representation in research on AYAs diagnosed with cancer using observational, cross-sectional data from the large Young Adults with Cancer in Their Prime (YACPRIME) study. The purpose was to better understand the psychosocial outcomes for those from diverse racial and ethnic groups. A total of 622 participants with a mean age of 34.15 years completed an online survey, including measures of post-traumatic growth, quality of life, psychological distress, and social support. Of this sample, 2% (n = 13) of the participants self-identified as Indigenous, 3% (n = 21) as Asian, 3% (n = 20) as “other,” 4% (n = 25) as multi-racial, and 87% (n = 543) as White. A one-way ANOVA indicated a statistically significant difference between racial and ethnic groups in relation to spiritual change, a subscale of post-traumatic growth, F(4,548) = 6.02, p < 0.001. Post hoc analyses showed that those under the “other” category endorsed greater levels of spiritual change than those who identified as multi-racial (p < 0.001, 95% CI = [2.49,7.09]) and those who identified as White (p < 0.001, 95% CI = [1.60,5.04]). Similarly, participants that identified as Indigenous endorsed greater levels of spiritual change than those that identified as White (p = 0.03, 95% CI = [1.16,4.08]) and those that identified as multi-racial (p = 0.005, 95% CI = [1.10,6.07]). We provided an extensive discussion on the challenges and limitations of interpreting these findings, given the unequal and small sample sizes across groups. We concluded by outlining key recommendations for researchers to move towards greater equity, inclusivity, and culturally responsiveness in future work.
... Furthermore, significantly greater proportion of female participants did not participate in either PE class or sports club at school. This gender difference in PA participation has been reported previously in healthy children [39,40], adolescents [41][42][43], and childhood cancer survivors [44][45][46]. Lower levels of PA participation among female gender regardless of age have been one of the important public health issues, and it is not different in childhood cancer survivors. Knowing that PA levels are already extremely low in childhood cancer survivors, even lower PA levels among female childhood cancer survivors are of great concern. ...
Purpose
The purpose of the current study was to explore physical activity (PA) levels, exercise preferences, and perceived barriers to PA in childhood cancer survivors.
Methods
This cross-sectional study surveyed 120 childhood cancer survivors aged 8–18 years from the pediatric oncology center in South Korea between March and August 2017. The modified Exercise & Quality of Life questionnaire, Korea Youth Risk Behavior Web-based Survey, and Godin Leisure-Time Questionnaire were used to assess PA levels, preferences, and exercise barriers.
Results
Among 120 participants (72 boys, 48 girls) whose average age at the time of the survey was 14.57 ± 3.00 years and the average age at diagnosis was 8.22 years, the three most common diagnoses were acute leukemia (43.3%), brain tumor (13.3%), and malignant lymphoma (10.8%). Only 16 participants (5%) met the PA recommendations for children (at least 60 min of moderate PA per day). The most preferred sporting activities included soccer, basketball, strengthening exercises, badminton, dance, and taekwondo. They generally had positive attitudes toward exercise, and more than 63% of participants intended to exercise the following month. The five most prevalent perceived barriers to exercise were lack of time, poor health, reluctance to sweat, lack of exercise skills, and no exercise partners.
Conclusions
While most childhood cancer survivors did not meet the PA recommendation, most of them agreed that exercise was beneficial, and they intended to participate in the exercise. Exercise and PA programs should be tailored to the personal health and preferences of childhood cancer survivors.
... 3 Regular physical activity may mitigate the risk of some late effects. 4 However, 42-72% of childhood cancer survivors demonstrate insufficient rates of physical activity, [5][6][7][8][9] with rates lower than the general population. 10,11 Physical activity declines sharply in adolescence. ...
Background
This study evaluated the feasibility of a technology‐enhanced group‐based fitness intervention for adolescent and young adult (AYA) survivors of childhood cancer.
Procedure
AYA survivors ages 13‐25 years were randomized to the intervention (eight in‐person group sessions with mobile app and FitBit followed by 4 weeks of app and FitBit only) or waitlist control. Assessments were at 0, 2, 3, 6, and 9 months. Feasibility was evaluated by enrollment, retention, attendance, app engagement, and satisfaction. Secondary outcomes included physical activity, muscular strength/endurance, cardiorespiratory fitness, health‐related quality of life, and fatigue.
Results
A total of 354 survivors were mailed participation letters; 68 (19%) were screened, of which 56 were eligible and 49 enrolled (88% of those screened eligible, 14% of total potentially eligible). Forty‐nine survivors (M age = 18.5 years, 49% female) completed baseline assessments and were randomized (25 intervention, 24 waitlist). Thirty‐seven (76%) completed the postintervention assessment and 32 (65%) completed the final assessment. On average, participants attended 5.7 of eight sessions (range 1‐8). Overall intervention satisfaction was high (M = 4.3, SD = 0.58 on 1‐5 scale). Satisfaction with the companion app was moderately high (M = 3.4, SD = 0.97). The intervention group demonstrated significantly greater improvement in lower body muscle strength compared to the waitlist postintervention, and small but not statistically significant changes in other secondary measures.
Conclusions
A group‐based intervention with a mobile app and fitness tracker was acceptable but has limited reach due to geographical barriers and competing demands experienced by AYA survivors.
... 10 Reports from the Childhood Cancer Survivor Study (CCSS) cohort demonstrate high rates of insufficient activity among adult survivors of childhood cancer (42-72% in different subgroups). [11][12][13] Factors associated with inactivity among adult survivors of childhood cancer include female sex, black race, older age at study, lower educational attainment, higher body mass index, smoking, depression, diagnosis of medulloblastoma or osteosarcoma, and treatment with cranial radiation or amputation. 14 Very few studies have examined correlates of physical activity in adolescent survivors of childhood cancer. ...
Objective:
To evaluate concurrent and longitudinal associations between psychosocial functioning and physical activity in adolescent and young adult survivors of early childhood cancer.
Methods:
Adolescent survivors of early childhood cancer (diagnosed before age four) participating in the Childhood Cancer Survivor Study completed the Coping Health and Illness Profile-Adolescent Edition (CHIP-AE; n=303; mean age at survey 17.6 years). A subset of these survivors (n=248) completed a follow-up survey an average of 6.0 years later (range: 4-10). Logistic regression identified associations between psychosocial functioning in adolescence and physical activity levels in adolescence and young adulthood.
Results:
Survivors reported low physical activity as adolescents (46.1% scored below CHIP-AE cut-point) and young adults (40.8% below CDC guidelines). Poor physical activity during adolescence was associated with female sex (OR=2.06, 95%CI=1.18-3.68), parents with less than a college education (OR=1.91, 95%CI 1.11-3.32), previous treatment with cranial radiation (OR=3.35, 95%CI=1.69-6.88), TV time (OR=1.77, 95%CI=1.00-3.14), and limitations of activity due to health or mobility restrictions (OR=8.28, 95%CI=2.87-30.34). Poor diet (OR=1.84, 95%CI=1.05-3.26) and low self-esteem (OR=1.80, 95%CI=0.99-3.31) during adolescence were associated with lower odds of meeting CDC physical activity guidelines in young adulthood.
Conclusion:
These findings provide targets for future interventional studies to improve physical activity in this high-risk population.
... Weight gain is usually the result of positive energy balance, i.e., levels of energy intake exceeding levels of energy expenditure. Existing studies provide consistent evidence that childhood cancer survivors are sedentary and have low levels of physical activity [12][13][14][15][16][17][18][19][20]. However, the energy gap identified in childhood cancer survivors is quite large-the mean total energy expenditure was approximately 500 kcal/day lower than the estimated energy requirement [21]. ...
Purpose of review:
Childhood cancer survivors experience excessive weight gain early in treatment. Lifestyle interventions need to be initiated early in cancer care to prevent the early onset of obesity and cardiovascular disease (CVD). We reviewed the existing literature on early lifestyle interventions in childhood cancer survivors and consider implications for clinical care.
Recent findings:
Few lifestyle interventions focus on improving nutrition in childhood cancer survivors. A consistent effect on reducing obesity and CVD risk factors is not evident from the limited number of studies with heterogeneous intervention characteristics, although interventions with a longer duration and follow-up show more promising trends. Future lifestyle interventions should be of a longer duration and include a nutrition component. Interventions with a longer duration and follow-up are needed to assess the timing and sustainability of the intervention effect. Lifestyle interventions introduced early in cancer care are both safe and feasible.
... This can be explained by both Pap rates and hysterectomy rates being higher for survivors than population rates. Compared with the Childhood Cancer Survivor Study (CCSS) [26][27][28], our survivors' overall uncorrected Pap rate was lower (71.8% for our study; 78.2-80.9% for CCSS). ...
PurposeThe study aims to better understand Pap test utilization for cancer survivors diagnosed before age 25 in British Columbia (BC), Canada. MethodsA population-based cross-sectional data linkage study that included 1285 5-year female cancer survivors diagnosed with cancer before age 25 and 12,185 randomly selected and birth-year-matched BC female residents. Pap participation rates in 2008–2010, both uncorrected and corrected for hysterectomy status, were compared between two groups. Adjusted prevalence ratios (PRadj) were calculated to examine (1) associations between factors and Pap rates in each group and (2) interactions between factors and groups, using log-binomial regression models. ResultsOverall Pap rates, both uncorrected and corrected, were higher for survivors (71.8%; 72.9%) than population (69%; 69.7%). Pap rates were 4.8–5.1 and 17.8–22.4% higher for survivors aged 30–39 and 50–59 respectively. Significantly higher Pap test utilization was associated with previous Pap tests (PRadj = 1.83, 95%CI = 1.76–1.89) and previous cervical procedures (1.20, 95%CI = 1.15–1.25). Hysterectomy rates were doubled for survivors (7.4%) than population (3.7%). This did not affect Pap participation rate comparisons between two groups. In both groups, 51.6–70% of females with hysterectomies still received Pap tests. Conclusion
Survivors’ Pap test utilization was significantly higher than population, but lower than the Canadian benchmark of 90%. Hysterectomy correction does not affect this observation. Cervical cancer screening is suboptimal for survivors. Females with prior hysterectomies might have received unnecessary Pap tests. Implications for Cancer SurvivorsSurvivors without prior hysterectomies should continue to undergo Pap tests recommended by provincial guidelines, to optimize their health.
... 6 In subsequent analyses of the CCSS cohort, minority survivors were more likely to have lower educational attainment, income, and rates of insurance coverage compared to non-Hispanic Whites; however, after adjusting for these markers of socioeconomic status, race and ethnicity were not independently associated with adverse health outcomes. 27 In this study, we observed a small, but statistically significant impact of median population income on risk-based survivor-focused care versus general medical care among all participants, which was mitigated by the inclusion of additional population measures in the U.S.-only population. In the U.S.only model that included population size, number of physicians/surgeons, and number of CCSS participating centers within 100 miles, in addition to population density and population median income, the prior effect of median income was replaced by a small, but significant effect of proximity to a CCSS center. ...
Purpose:
To determine the independent contribution of population socioeconomic and health system factors on childhood cancer survivors' medical care and screening.
Methods:
7899 childhood cancer survivors in the United States and Canada enrolled in the Childhood Cancer Survivor Study (CCSS). Population-level factors were derived from U.S. Area Health Resource File or 201 Canadian Census. Health service utilization and individual-level factors were self-reported. Multivariable logistic regression was used to calculate the effect of population factors on medical care (any care vs. no care; risk-based care vs. general care) and indicated echocardiogram or mammogram, adjusting for individual sociodemographic and health status.
Results:
After adjusting for individual factors, population factors had a nominal impact on childhood cancer survivors' medical care and screening. Higher population median income was associated with risk-based survivor-focused care versus general care (odds ratio [OR] 1.05, 95% confidence interval [CI], 1.01-1.09) among all participants, but not among U.S. residents only (OR 1.03, 95% CI, 0.99-1.07). For U.S. residents, the number of CCSS centers within the geographic area was associated with greater odds of receiving risk-based survivor-focused medical care (OR 1.12, 95% CI, 1.04-1.20). Areas with higher median income had higher rates of echocardiogram screening among survivors at risk of cardiomyopathy (for every $10,000 increase in median income, there is a 12% increase in odds of echocardiogram screening; 95% CI 1.05-1.20). A positive relationship was identified between greater number of physicians and surgeons in the county of residence and recommended echocardiogram (for every additional 1000 physicians and surgeons: OR 1.12, 95% CI, 1.01-1.23). We found no association between population-level factors and mammography screening.
Conclusions:
Population socioeconomic disparities moderately affect childhood cancer survivors' risk-based medical care and screening after accounting for individual sociodemographic and health factors.
... 2, 3 Although previous studies have described the high burden of morbidity and premature mortality borne by childhood cancer survivors, limited attention has been focused on racial/ethnic differences in this burden. 4 In the 2010 census, black race made up 12% of the US population, Hispanic origin constituted 16%, and Asian/Pacific Islanders made up 5%. By 2042, the proportion of individuals in the United States belonging to a racial/ethnic background other than non-Hispanic white (NHW) is estimated to exceed 50%. 5 Given the significant (and growing) racial/ethnic diversity in the United States, and the paucity of information about race/ethnicity-specific morbidity/mortality in childhood cancer survivors, we describe longterm outcomes experienced by major racial/ ethnic groups using the Childhood Cancer Survivor Study (CCSS) cohort, focusing primarily on late mortality, subsequent neoplasms, and chronic health conditions. ...
Purpose:
Childhood cancer survivors carry a high burden of treatment-related morbidity; however, race/ethnicity-specific risks of adverse outcomes are not well understood.
Methods:
Data from the Childhood Cancer Survivor Study, a cohort of survivors of at least 5 years, were used to compare Hispanic (n = 750, 5.4%) and non-Hispanic black (NHB: n = 694, 5.0%) survivors to non-Hispanic white patients (NHW: n = 12,397, 89.6%) for late mortality, subsequent neoplasms, and chronic health conditions.
Results:
NHBs and Hispanics reported lower socioeconomic status (SES) and higher prevalence of obesity, and NHBs reported higher prevalence of hypertension. NHBs had higher rate of all-cause mortality (relative rate [RR], 1.4; 95% CI, 1.1 to 1.9; P = .008), which was abrogated (RR, 1.0; 95% CI, 0.8 to 1.4; P = .9) after adjusting for SES. Nonmelanoma skin cancer was not observed among irradiated NHBs, and the risk was lower among Hispanic survivors (RR, 0.3; 95% CI, 0.1 to 0.7) compared with NHWs. Both NHBs and Hispanics demonstrated elevated risks for diabetes; these risks persisted after adjusting for SES and obesity (NHBs: RR, 2.8; 95% CI, 1.1 to 6.7; Hispanics: RR, 3.1; 95% CI, 1.5 to 6.4). NHBs were more likely to report cardiac conditions (RR, 1.8; 95% CI, 1.1 to 2.7), but the risk was attenuated after adjusting for cardiovascular risk factors. Therapeutic exposures did not affect racial/ethnic differences in mortality (all cause or cause specific), chronic health conditions, or subsequent neoplasms.
Conclusion:
By and large, NHB and Hispanic childhood cancer survivors experience a comparable burden of morbidity and mortality to their NHW counterparts. The few differences in risk were explained by the racial/ethnic differences in socioeconomic status and/or cardiovascular risk factors.
... Survivors-Eight studies that assessed physical activity level in childhood cancer survivors came from Childhood Cancer Survivor Study (CCSS) [16,29,30,32,33,37,38,44]. CCSS assessed physical activity using six questions from the Behavior Risk Factor Surveillance System (BRFSS) that allows one to evaluate whether subjects meet the CDC guideline for physical activity as well as if subjects engaged in any leisure-time physical activity in the past month [13]. ...
Despite advances in cancer treatment, childhood cancer survivors are at higher risk of developing chronic health conditions than peers who have not had cancer. Being overweight or obese adds to the already elevated risk of cardiovascular diseases and metabolic abnormalities. Diet and physical activity are modifiable behaviors that reduce obesity risk and have been shown to improve cancer survival in adult cancer survivors. Specific guidelines have been developed for cancer survivors that provide advice on nutrition, physical activity and weight management following cancer diagnosis and treatment. In this review, we report on existing nutrition and physical activity guidelines for cancer survivors, supplemented by available literature on diet and physical activity status of childhood cancer survivors and their associations with health-related outcomes. The 2012 American Cancer Society (ACS) and the 2008 Children's Oncology Group (COG) guidelines provide similar advice on diet but the ACS guidelines also offer specific advice on physical activity and weight management. Thirty-one observational studies and 18 intervention trials published prior to June 2012 that met the inclusion criteria were reviewed. Results suggest that a high proportion of childhood cancer survivors had poor adherence to dietary and physical activity guidelines. Although findings from existing intervention trials are preliminary due to small sample size, available evidence suggests that exercise intervention is safe and feasible for patients and survivors of childhood cancer. Childhood cancer survivors should be encouraged to engage in physical activity, adopt a healthy diet, and maintain a healthy weight throughout cancer survivorship.
... For the first time there is a large and growing population of adults who are cured of childhood cancer. However, it is becoming clear that these long-term survivors face physical234567 and mental health consequences [8,9] from their cancer and treatment. Research has focused upon physical health obstacles experienced by survivors, but psychological, behavioral and social consequences of childhood cancer have received less attention. ...
Aims This study describes alcohol consumption among adult survivors of pediatric cancer compared to sibling controls and a national sample of healthy peers. Risk factors for heavy drinking among survivors are described. Design, setting and participants Cross-sectional data were utilized from the Childhood Cancer Survivor Study including adult survivors of pediatric cancer (n = 10 398) and a sibling cohort (n = 3034). Comparison data were drawn from the National Alcohol Survey (n = 4774). Measurement Alcohol consumption, demographic, cancer diagnosis, treatment and psychosocial factors were measured. Findings Compared to peers, survivors were slightly less likely to be risky [adjusted odds ratio (ORadj) = 0.9; confidence interval (CI) 0.8–1.0] and heavy drinkers (ORadj = 0.8; CI 0.7–0.9) and more likely to be current drinkers. Compared to siblings, survivors were less likely to be current, risky and heavy drinkers. Risk factors for survivors' heavy drinking included being age 18–21 years (ORadj = 2.0; 95% CI 1.5–2.6), male (ORadj = 2.1; 95% CI 1.8–2.6), having high school education or less (ORadj = 3.4; 95% CI 2.7–4.4) and drinking initiation before age 14 (ORadj = 6.9; 95% CI 4.4–10.8). Among survivors, symptoms of depression, anxiety or somatization, fair or poor self-assessed health, activity limitations and anxiety about cancer were associated with heavy drinking. Cognitively compromising treatment, brain tumors and older age at diagnosis were protective. Conclusions Adult survivors of childhood cancer show only a modest reduction in alcohol consumption compared to peers despite their more vulnerable health status. Distress and poorer health are associated with survivor heavy drinking. Screening for alcohol consumption should be instituted in long-term follow-up care and interventions among survivors and siblings should be established to reduce risk for early drinking.
... Physical activity. A substantial number of studies assessed physical activity level in childhood cancer survivors, including several publications from the CCSS in which self-reported physical activity was assessed by using adapted questions from the Behavior Risk Factor Surveillance System (41)(42)(43)(44)(45)(46)(47)(48)(49). Two CCSS studies reported that survivors were 60-70% more likely to be physically inactive than their siblings (47) or healthy controls (44). ...
A high prevalence of obesity and cardiometabolic conditions has been increasingly recognized in childhood cancer survivors. In particular, survivors of pediatric acute lymphoblastic leukemia have been found to be at risk of becoming overweight or obese early in treatment, with increases in weight maintained throughout treatment and beyond. Nutrition plays an important role in the etiology of obesity and cardiometabolic conditions and is among the few modifiable factors that can prevent or delay the early onset of these chronic conditions. However, nutritional intake in childhood cancer survivors has not been adequately examined and the evidence is built on data from small cohorts of survivors. In addition, the long-term impact of cancer diagnosis and treatment on survivors' nutritional intake as well as how survivors' nutritional intake is associated with chronic health conditions have not been well quantified in large-scale studies. Promoting family-based healthy lifestyles, preferably at a sensitive window of unhealthy weight gain, is a priority for preventing the early onset of obesity and cardiometabolic conditions in childhood cancer survivors.
... Knowledge of current levels of substance use among CCS is limited because prior work did not include an adequate representation of Hispanic CCS, did not include more recently treated CCS, and/or was based on relatively low levels of volunteer responses. [3,4] Only 5% of the Childhood Cancer Survivor Study (CCSS) cohort is Hispanic, [14] compared to 16.9% in the US population as whole. [15] Further, because data from the CCSS only includes patients diagnosed between 1970-1986, substance use patterns among more recently treated CCS is less clear. ...
Health-promoting behaviors are recommended to childhood cancer survivors (CCS) to reduce late effects resulting from cancer treatment. Understanding factors associated with substance use is needed, especially among Hispanic CCS who are underrepresented in previous studies. The objective of this study is to examine substance use behaviors of recently treated Hispanic and non-Hispanic CCS.
One hundred ninety-three Los Angeles County CCS who were diagnosed between 2000 and 2007 (54% Hispanic; mean age 19.9 years, SD = 2.8; mean age at diagnosis = 12.1, SD = 3.0; mean years since diagnosis = 7.8, SD = 2.0) provided self-reported information on substance use, demographics, clinical factors, religiosity, and depressive symptoms. Risk and protective factors for substance use were examined using multivariable logistic regression.
Prevalence of 30-day substance use was 11%, 25%, and 14% for tobacco, alcohol, and marijuana, respectively. In controlled regression models, age was positively associated with tobacco use, binge drinking, and polysubstance use (use of at least two of the three substances). Male gender, higher depressive symptoms, and higher socioeconomic status were associated with greater marijuana use. In addition, religiosity was negatively associated with the use of all substances.
The prevalence rates for substance use in this ethnically diverse representative sample of CCS are lower than those observed in the general population. Older CCS were at higher risk of substance use, and depression was associated with greater marijuana use. No differences by ethnicity were observed. Interventions for substance use prevention/cessation among CCS may be most effective if implemented before the age of 21 years and address mental health as part of survivorship care. Copyright © 2015 John Wiley & Sons, Ltd.
Copyright © 2015 John Wiley & Sons, Ltd.
... Lastly, to further compound risk factors, Black and Hispanic children are more likely to come from low income families, to have caregivers with lower educational attainment, and to have decreased access to health care compared to their White counterparts (Castellino et al., 2005;Cornelius, 1993;Guendelman & Schwalbe, 1986). Therefore, considering and assessing demographic and socioeconomic variables such as race, household make up, caregiver education, and financial status is vitally important to evaluating risk for psychosocial distress in pediatric oncology patients and their families. ...
The aim of this study was to investigate demographic and socioeconomic variables associated with risk for patient and family problems over the course of 1 year in a largely low-income and rural pediatric oncology population. Caregivers (n = 163) completed the Psychosocial Assessment Tool 2.0 up to 4 times during regular clinic visits. Multilevel modeling examined change over time, as well as demographic and socioeconomic variables associated with psychosocial risk. Results suggest that pediatric oncology patients with caregivers of lower educational attainment and financial difficulties are at significantly greater risk for psychosocial problems, and should be offered early psychological intervention.
... Although much of the data comes from studies of survivors of pediatric cancers, there is some evidence that the diets of AYA cancer survivors are suboptimal. Studies find that only between 16 and 54% of such survivors have the recommended amount of fat in their diets [61][62][63][64], 86% are consuming more than the recommended daily intake of sugar [64], and a low percentage are eating 5 or more servings of fruits and vegetables per day [26,[61][62][63].They are also less likely to meet physical activity guidelines than people in the general population, and they are less active and more sedentary than theirsiblings [26,[61][62][63][65][66][67][68].These behaviors are juxtaposed with observational evidence that physical activity not only improves quality of life but is also associated with prolonged survival for some types of cancer [69,70]. ...
Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.
©AlphaMed Press.
... Наибольшему риску подвержены девочки с диагнозом, установленным до 5-летнего возраста, а также страдающие лейкозами и лимфомами [94]. Тяжелые исходы заболевания не связаны с принадлежностью к национальным меньшинствам [95]. (18% среди населения) [108]. ...
Background:
Childhood cancer survivors (CCS) experience many long-term health problems that can be mitigated with recommended survivorship care. However, many CCS do not have access to survivorship care nor receive recommended survivorship care. We reviewed the empirical evidence of disparities in survivorship care for CCS.
Methods:
This systematic review searched PubMed, CINAHL, and PsycINFO for studies on survivorship care for CCS (PROSPERO: CRD42021227965) and abstracted the reported presence or absence of disparities in care. We screened 7945 citations, and of those, we reviewed 2760 publications at full text.
Results:
A total of 22 studies reported in 61 publications met inclusion criteria. Potential disparities by cancer treatment (N = 14), diagnosis (N = 13), sex (N = 13), and current age (N = 13) were frequently studied. There was high quality of evidence (QOE) of survivorship care disparities associated with non-White race, Hispanic ethnicity, and being uninsured. Moderate QOE demonstrated disparities among CCS who were unemployed and older. Lower QOE was found for disparities based on cancer diagnosis, cancer treatment, age at diagnosis, time since diagnosis, sex, insurance type, income, educational attainment, and geographic area.
Conclusions:
We found strong empirical evidence of disparities in survivorship care for CCS associated with race, ethnicity, and insurance status. Multiple other disparate groups, such as those by employment, income, insurance type, education, cancer diagnosis, age at diagnosis, time since diagnosis, cancer treatment, geographic area, sex, and self-identified gender warrant further investigation. Prospective, multilevel research is needed to examine the role of other patient characteristics as potential disparities hindering adequate survivorship care in CCS.
Background:
The long-term effects of childhood cancer are unclear in the Australian context. We examined hospitalisation trends for physical diseases and estimated the associated inpatient care costs in all 5-year childhood cancer survivors (CCS) diagnosed in Western Australia (WA) from 1982-2014.
Methods:
Hospitalisation records for 2,938 CCS and 24,792 comparisons were extracted from 1987- 2019 (median follow-up=12 years, min=1, max=32). The adjusted hazard ratio (aHR) of hospitalisation with 95% confidence intervals (CI) was estimated using the Andersen-Gill model for recurrent events. The cumulative burden of hospitalisations over time was assessed using the mean cumulative count method. The adjusted mean cost of hospitalisation was estimated using the generalised linear models.
Results:
We identified a higher risk of hospitalisation for all-cause (aHR=2.0, 95%CI= 1.8-2.2) physical disease in CCS than comparisons, with the highest risk for subsequent malignant neoplasms (aHR=15.0, 95%CI 11.3-19.8) and blood diseases (aHR=6.9, 95%CI 2.6-18.2). Characteristics associated with higher hospitalisation rates included female gender, diagnosis with bone tumours, cancer diagnosis age between 5-9 years, multiple childhood cancer diagnoses, multiple comorbidities, higher deprivation, increased remoteness, and Indigenous status. The difference in the mean total hospitalisation costs for any disease was significantly higher in survivors than comparisons (publicly funded $11,483 United States Dollar, p<0.05).
Conclusions:
The CCS population face a significantly higher risk of physical morbidity and higher cost of hospital-based care than the comparisons.
Impact:
Our study highlights the need for long-term follow-up healthcare services to prevent disease progression and mitigate the burden of physical morbidity on patients and hospital services.
Importance:
Cancer outcomes are relatively poor in adults who belong to minoritized racial and ethnic groups. Survival and long-term outcomes by race and ethnicity in individuals with childhood cancers are less studied.
Objective:
To evaluate survival and hospitalization among American Indian and Alaska Native, Asian, Black, and Hispanic children compared with non-Hispanic White children with cancer.
Design, setting, and participants:
This cohort study evaluated all individuals born in Washington State who were younger than 20 years (hereafter referred to as children) and had been diagnosed with cancer during 1987 to 2012, with follow-up ranging from 1 to 27 years. The data subset was built in 2019, and statistical analyses were completed in January 2022.
Exposures:
Race and ethnicity.
Main outcomes and measures:
Mortality and hospitalization events for all other racial and ethnic groups relative to non-Hispanic White children estimated by Cox proportional hazards regressions for the first 5 years after diagnosis and among cancer survivors 5 or more years after diagnosis.
Results:
A total of 4222 children (mean [SD] age, 8.4 [6.4] years; 2199 [52.1%] male; 113 American Indian and Alaska Native [2.7%], 311 Asian [7.4%], 196 Black [4.6%], 387 Hispanic [9.2%], and 3215 non-Hispanic White [76.1%]) with cancer diagnosed at younger than 20 years during 1987 to 2012 were included. Mortality was similar across all groups. Compared with non-Hispanic White survivors at less than 5 years after diagnosis, there were no greatly increased hazard ratios (HRs) for hospitalization. Among survivors at 5 or more years after diagnosis, hospitalization HRs were 1.7 (95% CI, 1.0-3.0) for American Indian and Alaska Native survivors and 1.5 (95% CI, 0.9-2.4) for Black survivors. Significantly increased HRs among Hispanic children were observed for infection-related (HR, 1.4; 95% CI, 1.2-1.6), endocrine-related (HR, 1.3; 95% CI, 1.1-1.6), hematologic-related (HR, 1.3; 95% CI, 1.1-1.5), respiratory-related (HR, 1.3; 95% CI, 1.0-1.5), and digestive-related (HR, 1.2; 95% CI, 1.0-1.5) conditions. American Indian and Alaskan Native children had increased HRs for infection-related (HR, 2.3; 95% CI, 1.2-4.5), hematologic-related (HR, 3.0; 95% CI, 1.4-6.5), and digestive-related (HR, 2.6; 95% CI, 1.3-5.4) conditions. Both American Indian and Alaska Native (HR, 3.6; 95% CI, 1.4-9.0) and Black (HR, 2.5; 95% CI, 1.2-5.5) children had increased mental health-related hospitalizations and death.
Conclusions and relevance:
In this cohort study, disproportionately increased long-term risks of hospitalization for physical and mental conditions may have contributed to worse outcomes by race. A key component to bridging the morbidity gap by race is improved understanding of reasons for greater cause-specific hospitalizations in some groups, with development of culturally appropriate intervention strategies.
Substance use among adolescents and young adults (AYAs) is associated with an increased risk of poor physical and mental health outcomes. For AYA childhood cancer survivors (CCSs), substance use may also increase their likelihood of experiencing late effects. As a result, professional organizations recommend that AYA CCSs be regularly screened for risk behaviors, including substance use. The best methods for assessing these behaviors as part of clinical care for AYA CCSs, however, remain unclear. To begin to address this gap, the purpose of this study was to systematically review written substance use measures that have been used with AYA CCSs and published between 2000 and 2020. A search of PubMed, PsycINFO, and CINAHL using terms related to substance use and AYA CCSs identified 47 articles representing 20 different written substance use measures that evaluated current substance use (i.e., use of alcohol, tobacco, marijuana, prescription medications taken in a manner other than as prescribed, and/or other illicit substances within the 12 months). Measures varied in domains assessed, item formats, and response formats. Results are presented alongside recommendations for selecting screening tools for use with AYA CCS populations in both clinical and research settings.
Background
Childhood cancer survivors (CCS) face increased risk of morbidity and are recommended to receive lifelong cancer related follow-up care. Identifying factors associated with follow-up care can inform efforts to support the long-term health of CCS.
Methods
Eligible CCS (diagnosed between 1996-2010) identified through the Los Angeles County Cancer Surveillance Program responded to a self-report survey that assessed demographic, clinical, health care engagement, and psychosocial risk and protective factors of recent (prior 2 years) cancer-related follow-up care. Weighted multivariable logistic regression was conducted to identify correlates of care. All statistical tests were 2-sided.
Results
The overall response rate was 44.9%, with an analytical sample of n = 1,106 (54.2% Hispanic; mean [SD] ages at survey, diagnosis, and years since diagnosis were 26.2 [4.9], 11.6 [5.4], and 14.5 [4.4] years, respectively). Fifty-seven percent reported a recent cancer-related visit, with lower rates reported among older survivors. Having insurance, more late effects, receipt of a written treatment summary, discussing long-term care needs with treating physician, knowledge of the need for long-term care, having a regular source of care, and higher healthcare self-efficacy were statistically significantly associated with greater odds of recent follow-up care, while older age, Hispanic or Other ethnicity (vs. non-Hispanic White), and years since diagnosis were associated with lower odds of recent care (all P’s<.05).
Conclusions
Age and ethnic disparities are observed in receipt of follow up care among young adult CCS. Potential intervention targets include comprehensive, ongoing patient education, provision of written treatment summaries, and culturally-tailored support to ensure equitable access to and utilization of care.
Purpose
To investigate racial/ethnic-related disparities by insurance status in “forgoing needed medical care in the last year due to finances” in childhood cancer survivors.
Methods
Our study included 3310 non-Hispanic/Latinx White, 562 non-Hispanic/Latinx Black, and 92 Hispanic/Latinx survivors from the St. Jude Lifetime Cohort Study. Logistic regression analyses, guided by Andersen’s Healthcare Utilization Model, were adjusted for “predisposing” (survey age, sex, childhood cancer diagnosis and treatment, and treatment era) and “need” (perceived health status) factors. Additional adjustment for household income/education and chronic health conditions was considered.
Results
Risk of forgoing care was highest among non-Hispanic/Latinx Blacks and lowest among Hispanics/Latinxs for each insurance status. Among privately insured survivors, relative to non-Hispanic/Latinx Whites, non-Hispanic/Latinx Blacks were more likely to forgo care (adjusted OR: 1.82, 95% CI: 1.30–2.54): this disparity remained despite additional adjustment for household income/education (adjusted OR: 1.43, 95% CI: 1.01–2.01). In contrast, publicly insured survivors, regardless of race/ethnicity, had similar risk of forgoing care as privately insured non-Hispanic/Latinx Whites. All uninsured survivors had high risk of forgoing care. Additional chronic health condition adjustment did not alter these results.
Conclusions
Provision of public insurance to all childhood cancer survivors may diminish racial/ethnic disparities in forgoing care that exist among the privately insured and reduce the risk of forgoing care among uninsured survivors to that of privately insured non-Hispanic/Latinx Whites.
Implications for Cancer Survivors
Under public insurance, childhood cancer survivors had low risk of forgoing care, at the similar level to privately insured non-Hispanic/Latinx Whites, regardless of race/ethnicity.
Background
Cancer is the leading cause of death among Hispanics/Latinos. Thus, understanding health-related quality of life (HRQOL) needs among this diverse racial/ethnic group is critical. Using Ferrell’s multidimensional framework for measuring QOL, we synthesized evidence on HRQOL needs among Hispanic/Latino cancer survivors.Methods
We searched MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO, for English language articles published between 1995 and January 2020, reporting HRQOL among Hispanic/Latino cancer survivors in the USA.ResultsOf the 648 articles reviewed, 176 met inclusion criteria, with 100 of these studies focusing exclusively on breast cancer patients and no studies examining end-of-life HRQOL issues. Compared with other racial/ethnic groups, Hispanics/Latinos reported lower HRQOL and a higher symptom burden across multiple HRQOL domains. Over 80% of studies examining racial/ethnic differences in psychological well-being (n = 45) reported worse outcomes among Hispanics/Latinos compared with other racial/ethnic groups. Hispanic/Latino cancer survivors were also more likely to report suboptimal physical well-being in 60% of studies assessing racial/ethnic differences (n = 27), and Hispanics/Latinos also reported lower social well-being relative to non-Hispanics/Latinos in 78% of studies reporting these outcomes (n = 32). In contrast, reports of spiritual well-being and spirituality-based coping were higher among Hispanics/Latinos cancer survivors in 50% of studies examining racial/ethnic differences (n = 15).DiscussionFindings from this review point to the need for more systematic and tailored interventions to address HRQOL needs among this growing cancer survivor population. Future HRQOL research on Hispanics/Latinos should evaluate variations in HRQOL needs across cancer types and Hispanic/Latino subgroups and assess HRQOL needs during metastatic and end-of-life disease phases.
Objective: Childhood cancer survivors (CCS) treated with platinum-based chemotherapy are at risk of treatment-induced ototoxicity. To date, there is limited knowledge on the effect of ototoxicity on socio-demographic factors, the burden to obtain insurances and psychological distress in CCS. Design: Of the 653 CCS with completed questionnaires, 54 survivors had been treated with platinum. Ototoxicity (Münster score ≥ 2b) data were retrieved from pure-tone audiometry. All survivors completed a questionnaire consisting of the Distress Thermometer (DT), measuring the severity of distress and was recoded to a 0 (no distress)-10 (extreme distress) scale. The Hospital Anxiety and Depression Scale (HADS) was used to study the psychological distress (a score ≥ 15 is indicative for clinically significant distress). Results: Median age at diagnosis was 6.2 years (range: 0.01-17.8) and median follow-up time from end of treatment to questionnaire was 15.6 years (range: 3.2-43.7). There were no differences in attempts to obtain insurances, highest education achievement and (un) employment between platinum-treated survivors and non-platinum treated survivors. Among the 54 platinum-treated CCS, median HADS score of hearing impaired survivors (n=22 (median score: 4.5, range: 0.0-29)) was not significantly different from survivors without ototoxicity (n=32 (median score 5.5, range: 0.0-11, p=0.337)). Similarly, DT scores were not significantly different between survivors with or without ototoxicity (p=0.441). Compared to the 599 non-platinum treated survivors, median HADS and DT scores of platinum-treated survivors were not significantly different. Conclusion: Based on this first, small study, we didn't find differences between CCS who suffer from platinum-related ototoxicity and survivors without hearing impairment, suggesting that CCS with ototoxicity do not necessarily encounter more socio-demographic challenges and psychological distress than CCS without ototoxicity.
Long-term follow-up care for the childhood cancer survivor has evolved from describing late effects to evaluating interventions that might prevent or reduce the severity of long-term complications from previous life-saving treatments. This progression has led to an emphasis on disease prevention through health promotion. Guidance for health promotion has traditionally been provided to patients by a primary care provider. Due to the potential for adverse health outcomes in childhood cancer survivors, health-care providers must be aware of routine health promotion guidelines as well as those that are specifically relevant for the survivor. This chapter includes information on appropriate diet and physical activity, health-risk behaviors, complementary and alternative medicine, and general cancer screening that can be used by health-care providers counseling survivors about health promotion.
Although there have been tremendous strides in the treatment of childhood cancer over the past several decades, cancer survivors with limited access to quality medical care and follow up remain at a disadvantage. Long-term follow-up of the childhood cancer survivor continues to be of great concern to the medical community, and there are many challenges that create significant barriers to a good portion of survivors in obtaining and maintaining adequate medical surveillance. This chapter will review the current knowledge regarding the factors that create barriers and disparities in accessing quality care among childhood cancer survivors, and offer some possible strategies to improve access to affordable and efficacious medical care.
Childhood cancer survivors are at risk for health complications secondary to cancer treatment, and these late effects may be exacerbated by organ dysfunction, aging, and unhealthy behaviors. Despite their vulnerable health profiles, survivors engage in risky health behaviors at alarming rates, that are, in many instances, comparable to their peers who have never been treated for cancer. Tailored, lifestyle interventions that promote healthy behavioral practices and risk reduction strategies have been modestly effective across behaviors. This chapter will review prevalence, risk factors, and interventions that have been conducted to date with childhood cancer survivors in the areas of tobacco use, alcohol and illicit drug use, physical activity, nutrition, sun exposure, and risky sexual behavior. Recommendations for intervening with survivors in the healthcare setting to promote healthy behavior change will be provided.
Childhood cancer is a potentially traumatic experience for youth and their families. The impact of cancer on adolescents is especially significant given the critical developmental stage of adolescence and its expanding ecology encompassing school, friends, work, and romantic partners. Comprehensive care that includes physicians (pediatric oncologists and other medical subspecialists), nurses, social workers, child life specialists, nutritionists, teachers and tutors, psychologists, and other mental health professionals is critical for optimal treatment of adolescent cancer patients. In addition to curative treatment, the objectives of such care include behavioral interventions to improve quality of life, improve adherence, facilitate ''normal'' adolescent development, provide support to the patient and their families, and manage distress, pain, and other symptoms. The present chapter describes the characteristics of and medical issues related to adolescent cancer, the impact on adolescents and their families, related interventions, future research implications, and methodological considerations. The focus of this chapter is on those with cancer while they are in their teens and early twenties, or long-term survivors in the same age range.
Childhood cancer survivors are a growing population at increased risk for smoking-related health complications. This study compared smoking prevalence, age at smoking initiation, and time trend of smoking prevalence from 1997 to 2010 between adult survivors of childhood cancer and adults without a cancer history (controls) and identified predictors of smoking among these survivors.
Data were pooled from the 1997-2010 National Health Interview Survey (survivors, n = 1438; controls, n = 383,805). Smoking prevalence by age group was calculated using weighted least square regression analysis and weighted linear regression of prevalence on year for trend analysis. Logistic regression analyses adjusting for sample weights and design effects were performed to identify predictors of smoking among survivors.
Compared to controls, survivors were significantly more likely to be younger, female, non-Hispanic White, unemployed, with lower income, and to weigh less and smoke more. Survivors initiated smoking earlier than controls. Smoking prevalence among survivors peaked at age 30 and 40 years old, compared to age 25 years in controls. Smoking prevalence decreased consistently from 1997 to 2010 among controls, with larger significant declines in survivors that were subject to more year-to-year variability. Compared to nonsmoking survivors, those who smoke were significantly more likely to be non-Hispanic White, young, uninsured, poor, to have a high school education or less, and to report drinking alcohol.
Smoking in adult survivors of childhood cancer continues as a persistent risk factor across socioeconomic groups.
Targeted and tailored smoking cessation/prevention interventions for these survivors are needed.
To compare age-dependent changes in health status among childhood cancer survivors and a sibling cohort.
Adult survivors of childhood cancer and siblings, all participants of the Childhood Cancer Survivor Study, completed three surveys assessing health status. At each of three time points, participants were classified as having poor outcomes in general health, mental health, function, or daily activities if they indicated moderate to extreme impairment. Generalized linear mixed models were used to compare survivors with siblings for each outcome as a function of age and to identify host- and treatment-related factors associated with age-dependent worsening health status.
Adverse health status outcomes were more frequent among survivors than siblings, with evidence of a steeper trajectory of age-dependent change among female survivors with impairment in at least one health status domain (P = .01). In adjusted models, survivors were more likely than siblings to report poor general health (prevalence ratio [PR], 2.37; 95% CI, 2.09 to 2.68), adverse mental health (PR, 1.66; 95% CI, 1.52 to 1.80), functional impairment (PR, 4.53; 95% CI, 3.91 to 5.24), activity limitations (PR, 2.38; 95% CI, 2.12 to 2.67), and an adverse health status outcome in any domain (PR, 2.10; 95% CI, 1.97 to 2.23). Cancer treatment and health behaviors influence the magnitude of differences by age groups. Chronic conditions were associated with adverse health status outcomes across organ systems.
The prevalence of poor health status is higher among survivors than siblings, increases rapidly with age, particularly among female participants, and is related to an increasing burden of chronic health conditions.
© 2014 by American Society of Clinical Oncology.
Childhood cancer survivors are at an increased risk of obesity but causes for this elevated risk are uncertain. We evaluated total energy expenditure in childhood cancer survivors using the doubly labeled water method in a cross-sectional study of 17 survivors of pediatric leukemia or lymphoma (median age, 11.5 y). Mean total energy expenditure was 2073 kcal/d, which was nearly 500 kcal/d lower than estimated energy requirements with recommended levels of physical activity. This energy gap is likely to contribute to the risk of obesity in this population and future trials are needed to assess implications and potential treatment strategies.
Background and Objectives: Psychooncology research and practice has grown exponentially in recent years. We review the evidence-based accomplishments of psychooncology in key areas that inform clinical practice. Methods: We reviewed the following computerized databases: PubMed, Embase, Cochrane, Ovid Medline and Psychinfo for studies on predetermined areas of interest representing the continuum of current psychooncology, focusing on meta-analyses and controlled studies. Results: Cancer related psychological distress occurs in one third of patients. Psychological factors are of importance in cancer prevention such as the relationship of smoking to depression. The association between personality styles and cancer vulnerability is not strong, but social support is a well-established prognostic factor. Existential distress may manifest as demoralization; meaning and dignity-based therapies have been designed to assuage existential angst in the cancer setting. Psychotherapy is efficacious in ameliorating cancer related distress, anxiety and depression, with newer models focusing on meaning and adaptive coping. Although there is not a strong evidence-base for the impact of psychooncology on survival, psychological factors clearly impact on adherence to cancer treatment. Most survivors do well overall, but concerns relate to the long term impact of specific treatments or special populations including children. Neurocognitive effects of chemotherapy have recently been associated with carriers of Alzheimer precursor genes. Doctor-patient communication is of increasing clinical interest alongside concern that physician burnout is increasing. Conclusions: Evidence-based research informs psychooncology's clinical practice and service provision in 2006.
There are an estimated 11.1 million cancer survivors in the United States, and cancer is increasingly being seen as a manageable chronic disease. Unfortunately, cancer survivors may experience both physical and psychosocial long-term and late effects of cancer and its treatments that can have a profound effect on both health status and quality of life. Specialized cancer survivorship clinics have been started in many cancer centers in response to the needs of the growing number of survivors, but the overall costs and effectiveness associated with providing survivorship-focused care have yet to be evaluated. This paper explores the body of knowledge that contributed to the development of survivorship clinics and examines the potential benefits of these clinics along with a real-world description of a dedicated adult survivorship clinic.
IntroductionBackground
Developmental issuesPsychiatric disordersLong-term issues for adult survivorsFamilies of paediatric patients and survivorsTherapeutic interventionsAcknowledgementsSuggested further readingReferences
Objective.
—To encourage increased participation in physical activity among Americans of all ages by issuing a public health recommendation on the types and amounts of physical activity needed for health promotion and disease prevention.
OBJECTIVE--To encourage increased participation in physical activity among Americans of all ages by issuing a public health recommendation on the types and amounts of physical activity needed for health promotion and disease prevention. PARTICIPANTS--A planning committee of five scientists was established by the Centers for Disease Control and Prevention and the American College of Sports Medicine to organize a workshop. This committee selected 15 other workshop discussants on the basis of their research expertise in issues related to the health implications of physical activity. Several relevant professional or scientific organizations and federal agencies also were represented. EVIDENCE--The panel of experts reviewed the pertinent physiological, epidemiologic, and clinical evidence, including primary research articles and recent review articles. CONSENSUS PROCESS--Major issues related to physical activity and health were outlined, and selected members of the expert panel drafted sections of the paper from this outline. A draft manuscript was prepared by the planning committee and circulated to the full panel in advance of the 2-day workshop. During the workshop, each section of the manuscript was reviewed by the expert panel. Primary attention was given to achieving group consensus concerning the recommended types and amounts of physical activity. A concise \"public health message was developed to express the recommendations of the panel. During the ensuing months, the consensus statement was further reviewed and revised and was formally endorsed by both the Centers for Disease Control and Prevention and the American College of Sports Medicine. CONCLUSION--Every US adult should accumulate 30 minutes or more of moderate-intensity physical activity on most, preferably all, days of the weekType: CONSENSUS DEVELOPMENT CONFERENCEType: JOURNAL ARTICLEType: REVIEWLanguage: Eng
This study was undertaken to clarify the complex relationship between poverty and race with disease-specific mortality. Data from the 1987 National Health Interview Survey and the 1986 National Mortality Followback Survey were used to estimate standardized mortality ratios (SMRs) for various categories (all causes, all cancers, noncancerous medical causes, lung and breast cancers, ischemic heart disease, and cerebrovascular disease) associated with income below the poverty line and were compared with those with adequate or better than adequate income. All SMRs were substantially elevated. The SMRs were not appreciably affected by adjustments for confounding by alcohol consumption, occupation, or smoking. Sex-specific SMRs of blacks relative to whites with the exception of ischemic heart disease were significantly elevated for males but not for females with the exception of the SMR for all causes. However, when adjusted for per capita income within the family, black mortality never significantly exceeded that of whites. These results strongly support the conclusion that mortality differences between blacks and whites are due to differences in income and related factors. However, it is unclear why poverty should be associated with elevation in cancer relative risk.
As demonstrated by efforts to expand Medicaid coverage for poor and needy children, removing barriers to medical care continues to be an important social policy goal. Data from the 1987 National Medical Expenditure Survey, a multistage probability sample of 15,000 US households, was used to examine some of the barriers that black and Hispanic children encounter in obtaining access to medical care. Results from the 1987 study indicate that black and Hispanic children were more likely than white children to be poor, uninsured members of single-parent households, and to have to wait longer to see a medical provider. Yet differences in waiting time at the usual source of care remained after controlling for insurance. In 1987, 18.6% of uninsured white children were without a usual source of care compared with 28.4% and 25.2% of uninsured black and Hispanic children, respectively. Furthermore, 17.6% of uninsured white children made at least one routine visit to a physician during 1987, while only 11.4% and 10.6% of the uninsured black and Hispanic children, respectively, saw a physician for a regular checkup.
While the unemployment rate of African-American people is more than twice that of the white population, the research on the impact of unemployment on the health of this population is scarce. This study analysed the impact of unemployment on depression and well being among African-American people, and the factors associated with well being.
Logistic and multiple regression models were used to analyse panel data collected in the National Survey of Families and Households 1987-1992. African-American (1369) and white (6660) respondents were analysed separately. Outcome variables included an index of depression and self reported health status.
Differences between employment and unemployment groups were less significant for African-Americans than for the white population in predicting depression and well being. Health enhancing factors such as education and wealth were significantly associated with better health and lower depression indices among the white population but not consistently so among African-Americans. Satisfaction with personal relationships was the strongest predictor of well being for both groups.
Research should focus on the special needs and circumstances of African-Americans, because protective factors may not have the same impact in different groups of the population.
To assess the effects of health need, enabling factors, and predisposing factors on entry into any type of care, volume of care, use of emergency services, hospitalization, and receipt of preventive services.
Multiple regression analysis with cross-sectional data.
Participants were the 1001 adults who identified themselves as Hispanic in the Commonwealth Fund Minority Health Survey; a telephone survey of noninstitutionalized persons designed to oversample minorities was conducted.
The 3 Hispanic subpopulations had similar sociodemographic profiles and similar patterns of healthcare utilization, except that Hispanics of other national origins were more likely to use preventive care compared with Mexican Americans and Puerto Ricans. Overall, 78% of the Hispanics surveyed entered the healthcare system in the past year, making an average of 5.25 visits. After controlling for other factors, immigrants had fewer visits and were less likely to have received preventive care. A regular source of care and insurance coverage influenced entry and volume of care, but was not associated with emergency services or hospitalizations.
Access to care for Hispanics remains a major problem, significantly affected by structural and financial factors, personal experiences with the healthcare system, and predisposing factors. Policy solutions that address the health service needs of the uninsured will largely benefit Hispanics. In addition, as managed care plans compete for contracts and become more multicultural, access to care for Hispanics, including the uninsured, may improve through market forces.
The authors' review of the health services literature since the release of the landmark Report of the Secretary's Task Force Report of Black and Minority Health in 1985 revealed significant differences in access to medical care by race and ethnicity within certain disease categories and types of health services. The differences are not explained by such factors as socioeconomic status (SES), insurance coverage, stage or severity of disease, comorbidities, type and availability of health care services, and patient preferences. Under certain circumstances when important variables are controlled, racial and ethnic disparities in access are reduced and may disappear. Nonetheless, the literature shows that racial and ethnic disparities persist in significant measure for several disease categories and service types. The complex challenge facing current and future researchers is to understand the basis for such disparities and to determine why disparities are apparent in some but not other disease categories and service types.
This report presents final 1999 data on the 10 leading causes of death in the United States by age, race, sex, and Hispanic origin. Leading causes of infant, neonatal, and postneonatal death are also presented. This report supplements the annual report of final mortality statistics and responds to an increasing volume of requests by data users for leading-cause tables with more age and race detail than previously published.
Data in this report are based on information from all death certificates filed in the 50 States and the District of Columbia in 1999. Causes of death classified by the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) are ranked according to the number of deaths assigned to rankable causes. Age categories used to present leading causes of death in this report represent a substantial expansion from the age categories previously used to present leading-cause data in the annual report of final mortality statistics.
In 1999 the 10 leading causes of death were (in rank order) Diseases of heart; Malignant neoplasms; Cerebrovascular diseases; Chronic lower respiratory diseases; Accidents; Diabetes mellitus; Influenza and pneumonia; Alzheimer's disease; Nephritis, nephrotic syndrome, and nephrosis; and Septicemia and accounted for nearly 80 percent of all deaths occurring in the United States. Differences in the rankings are evident by age, sex, race, and Hispanic origin. Leading causes of infant death for 1999 were (in rank order) Congenital malformations, deformations and chromosomal abnormalities; Disorders related to short gestation and low birthweight, not elsewhere classified; Sudden infant death syndrome; newborn affected by maternal complications of pregnancy; Respiratory distress of newborn; Newborn affected by complications of placenta, cord, and membranes; Accidents; Bacterial sepsis of newborn; Diseases of the circulatory system; and Atelectasis. Important variation in the leading causes of infant death is noted for the neonatal and postneonatal periods.
PURPOSE: To examine the determinants of smoking behavior among participants in the Childhood Cancer Survivors Study (CCSS).
METHODS: This retrospective cohort survey study was conducted among 9,709 childhood cancer survivors. Main outcomes included smoking initiation and cessation.
RESULTS: Twenty-eight percent of patients reported ever smoking and 17% reported being current smokers. Standardized to United States population rates, the observed to expected (O/E) ratios and corresponding 95% confidence limits (95% CL) of cigarette smoking were 0.72 (95% CL, 0.69, 0.75) among all survivors and 0.71 (95% CL, 0.68 to 0.74) and 0.81 (95% CL, 0.70, 0.93) among whites and nonwhites, respectively. Significantly lower O/E ratios were present among both males (O/E, 0.73) and females (O/E, 0.70). Factors independently associated with a statistically significant relative risk of smoking initiation included older age at cancer diagnosis, lower household income, less education, not having had pulmonary-related cancer treatment, and not having had brain radiation. Blacks were less likely to start smoking. Survivors who smoked were significantly more likely to quit (O/E, 1.22; 95% CL, 1.15, 1.30). Among ever-smokers, factors associated with the likelihood of being a current smoker included age less than 13 years at smoking initiation, less education, and having had brain radiation; those age less than 3 years at cancer diagnosis were significantly more likely to be ex-smokers.
CONCLUSIONS: Although survivors in the CCSS cohort seem to be smoking at rates below the general population, interventions are needed to prevent smoking initiation and promote cessation in this distinct population.
The authors’ review of the health services literature since the release of the landmark Report of the Secretary’s Task Force Report of Black and Minority Health in 1985 revealed significant differences in access to medical care by race and ethnicity within certain disease categories and types of health services. The differences are not explained by such factors as socioeconomic status (SES), insurance coverage, stage or severity of disease, comorbidities, type and availability of health care services, and patient preferences. Under certain circumstances when important variables are controlled, racial and ethnic disparities in access are reduced and may disappear. Nonetheless, the literature shows that racial and ethnic disparities persist in significant measure for several disease categories and service types. The complex challenge facing current and future researchers is to understand the basis for such disparities and to determine why disparities are apparent in some but not other disease categories and service types.
This article focuses on racial and ethnic disparities in health care, describing both absolute differences and relative changes in access to care and the use of health services among whites, blacks, and Hispanics over the past two decades. Using data from a series of three nationally representative medical expenditure surveys, the authors present descriptive statistics on disparities in access and use between minorities and whites over time. They also use multivariate analyses to isolate the extent to which health insurance and income explain those disparities. The authors find that disparities increased between 1977 and 1996, particularly for Hispanic Americans. Results also show that approximately one half to three quarters of the disparities observed in 1996 would remain even if racial and ethnic disparities in income and health insurance coverage were eliminated.
Health insurance confers important private and social benefits. Disparities in coverage among the population remain an important public policy issue. The authors focus on the health insurance status of white, black, and Hispanic Americans in both 1987 and 1996 and identify gaps in minority health care coverage relative to white Americans. They also investigate the access of workers in these groups to employment-based health insurance. Identified are factors underlying changes in the insurance status of workers during the past decade in terms of changes in population characteristics and structural shifts underlying the demand for and supply of health insurance. The authors find that while coverage has declined for workers in most racial/ethnic groups, the experience of Hispanic males appears to be unique in that changes in their characteristics as well as structural shifts account for their decline in employment-related coverage. Structural shifts dominated the changes in coverage rates for other groups.
Objective.
—To examine the extent of binge drinking by college students and the ensuing health and behavioral problems that binge drinkers create for themselves and others on their campus.Design.
—Self-administered survey mailed to a national representative sample of US 4-year college students.Setting.
—One hundred forty US 4-year colleges in 1993.Participants.
—A total of 17592 college students.Main Outcome Measures.
—Self-reports of drinking behavior, alcohol-related health problems, and other problems.Results.
—Almost half (44%) of college students responding to the survey were binge drinkers, including almost one fifth (19%) of the students who were frequent binge drinkers. Frequent binge drinkers are more likely to experience serious health and other consequences of their drinking behavior than other students. Almost half (47%) of the frequent binge drinkers experienced five or more different drinking-related problems, including injuries and engaging in unplanned sex, since the beginning of the school year. Most binge drinkers do not consider themselves to be problem drinkers and have not sought treatment for an alcohol problem. Binge drinkers create problems for classmates who are not binge drinkers. Students who are not binge drinkers at schools with higher binge rates were more likely than students at schools with lower binge rates to experience problems such as being pushed, hit, or assaulted or experiencing an unwanted sexual advance.Conclusions.
—Binge drinking is widespread on college campuses. Programs aimed at reducing this problem should focus on frequent binge drinkers, refer them to treatment or educational programs, and emphasize the harm they cause for students who are not binge drinkers.(JAMA. 1994;272:1672-1677)
Objective:
This study was undertaken to determine ethnicity/race-specific (white, black, and Hispanic) population-adjusted rates of US office-based physician visits in which a diagnosis of a depressive disorder was recorded or in which a diagnosis of a depressive disorder was recorded and antidepressant pharmacotherapy was prescribed.
Methods:
Data from the National Ambulatory Medical Care Survey for 1992 through 1997 were partitioned into three 2-year periods: 1992-1993, 1994-1995, and 1996-1997. For each 2-year period, data from office-based physician visits for patients aged 20 to 79 years were extracted to assess, by ethnicity/race, (1) the number of visits in which a diagnosis of a depressive illness was recorded (International Classification of Diseases, Ninth Revision, Clinical Modification codes 296.2-296.36, 300.4, or 311) and (2) the number of visits in which a diagnosis of a depressive illness was recorded and antidepressant pharmacotherapy was prescribed. We calculated ethnicity/race-specific rates (per 100 US population aged 20 to 79 years) of office-based visits in which a diagnosis of a depressive disorder was recorded and in which a diagnosis of a depressive disorder was recorded and antidepressant pharmacotherapy was prescribed. The specialty of the reporting physician and the proportion of patients receiving a selective serotonin reuptake inhibitor (SSRI) were also discerned.
Results:
From 1992-1993 to 1996-1997, the rate of office-based visits (per 100 US population aged 20 to 79 years) in which a diagnosis of a depressive disorder was recorded increased 3.7% for whites (from 10.9 to 11.3; P = 0.001), 31.0% for blacks (from 4.2 to 5.5; P = 0.001), and 72.9% for Hispanics (from 4.8 to 8.3; P = 0.001). The rate of office-based visits in which a diagnosis of a depressive disorder was recorded and antidepressant pharmacotherapy was prescribed increased 18.5% for whites (from 6.5 to 7.7 per 100; P = 0.001), 38.5% for blacks (from 2.6 to 3.6 per 100; P = 0.001). and 106.7% for Hispanics (from 3.0 to 6.2 per 100; P = 0.001). Between 1992-1993 and 1996-1997, use of an SSRI increased among whites and blacks (from 50.0% to 65.8% and from 40.5% to 58.2%, respectively), but declined among Hispanics (from 51.4% to 48.6%; all comparisons P = 0.001).
Conclusion:
By 1996-1997, the population-adjusted rates for Hispanics were within a quartile of those observed for whites, whereas the rates for blacks remained at less than half those observed in whites. The observed divergence in population-adjusted rates by ethnicity/race may reflect the nature of the patient-physician relationship, sensitivity and specificity of diagnostic techniques and instruments, and the wider social context in which an office-based visit occurs, including access to and type of health insurance and coverage for mental health services.
Objective.
—To collect information regarding knowledge about and attitudes toward cancer in a sample of adult health plan members, self-identified as Latino or Anglo.
Background:
Little is known about the screening behavior of older minority women, especially Hispanic women. Data from Los Angeles were compared to national data to examine any similarities and unique problems.
Methods:
In 1990, 726 women from Los Angeles older than 65 years of age were surveyed by telephone after being identified through a probability sample or through Medicare listings. Mammography experience and knowledge and attitudes about screening were collected. Differences in mammography experience by racial/ethnic group were computed using the chi-square test.
Results:
Hispanic women were not underscreened significantly compared with older white and black women. Approximately three quarters of Hispanics had had a mammogram in the previous 2 years, compared with 84% of blacks and 82% of whites. Income and education levels were more explanatory of underscreening than was race. For example, 50% of whites with incomes of less than $15,000 had been screened in the previous 2 years, compared with 71% of those with higher incomes. Hispanics, however, reported significantly more concerns about screening and getting breast cancer than did whites or blacks despite the Hispanics' lower incidence and mortality rates. Hispanics also reported more health insurance inadequacies and a poorer quality of life that may interfere with maintenance of screening behaviors.
Conclusions:
To maintain equal screening across racial/ethnic groups, national programs should focus on strategies that help Hispanics acculturate to achieve equal educational and other benefits. To decrease screening inequities within races and help realize the National Cancer Institute's Year 2000 goals, income and educational differences will need to be less pronounced.
Utilization patterns may be changing as managed care organizations actively market services to Latinos. This study compares use of any care, emergency services, inpatient hospitalization, nonemergency outpatient care only, and preventive care among 1,001 self-identified Latino and 1,107 white non-Latino adults. Data were from the 1994 Commonwealth Fund Survey of Minority Health. Latinos were less likely than white non-Latinos to have entered the health system for any type of care, to have been admitted to a hospital, or to have used preventive care. Access to a regular source of care along with financial factors reduced the ethnic/racial gap in the use of any care and preventive care, yet cultural and behavioral factors contributed little. Latinos in managed care plans, compared with fee-for-service systems, were twice as likely to receive preventive care. This suggests that managed care has the potential to reduce inequities in preventive care utilization.
Objectives:
This study compares the use of three cancer screening practices (Pap smear, mammogram, and clinical breast examination) 3 years prior to interview among five subgroups of Hispanic women, and examines whether sociodemographic; access; health behavior, perception, and knowledge; and acculturation factors predict screening practices for any subgroup.
Methods:
Descriptive and multiple logistic regression analyses were conducted with data pooled from the 1990 and 1992 National Health Interview Surveys on women who reported that they were Hispanic. The study sample includes 2,391 respondents: 668 Mexican-American, 537 Mexican, 332 Puerto Rican, 143 Cuban, and 711 other Hispanic women.
Results:
Subgroup profiles reveal differences in education, health insurance, use of English language, and screening use. Mexican women were the least likely to be screened with any procedure. Logistic regression results for each screening practice show that having a usual source of care was a positive predictor for obtaining each of the three screening practices within the last 3 years. Being married, being more than 50 years of age, and having knowledge of breast self-examination were all predictors of having a Pap smear. Having health insurance and ever having had a clinical breast examination and Pap smear were predictors of having a mammography, while age, knowledge of breast self-examination, ever having had a Pap smear and mammogram, and being a nonsmoker all predicted having a clinical breast examination.
Conclusions:
We conclude that access factors and prior screening are more strongly associated with current screening than are language and ethnic factors. Our data confirm that a disproportionate percentage of Hispanic women are low income and at risk of being underscreened. Our findings from a nationally representative sample of Hispanics have implications for provider practices, ethnic-specific community interventions, and future development of measures and data collection approaches.
Differential mortality exists in the United States both between racial/ethnic groups and along gradients of socioeconomic status. The specification of statistical models for processes underlying these observed disparities has been hindered by the fact that social and economic quantities are distributed in a highly nonrandom manner throughout the population. We sought to provide a substantive foundation for model development by representing the shape of the income-mortality relation by racial/ethnic group. We used data on black and white men and women from the longitudinal component of the National Health Interview Survey (NHIS), 1986-1990, which provided 1,191,824 person-years of follow-up and 12,165 mortal events. To account for family size when considering income, we used the ratio of annual family income to the federal poverty line for a family of similar composition. To avoid unnecessary categorizations and prior assumptions about model form, we employed kernel smoothing techniques and calculated the continuous mortality surface across dimensions of adjusted income and age for each of the gender and racial/ethnic groups. Representing regions of equal mortality density with contour plots, we observed interactions that need to be accommodated by any subsequent statistical models. We propose two general theories that provide a foundation for more elaborate and testable hypotheses in the future.
Death rates among US black men and women under 75 years of age are higher than for their white counterparts. The explanation for this excess risk, though attributed to socioeconomic factors, remains unclear. We calculated mortality rates by family income for blacks and whites in a representative sample of the US population (National Longitudinal Mortality Study). For persons aged less than 65 years of age, mortality rates are lower in those with higher family income for both blacks and whites, and both men and women. However, at each level of income, blacks have higher mortality than whites. Higher levels of family income are also associated with lower death rates from cardiovascular disease, cancer, and deaths from causes other than cardiovascular disease or cancer. After adjustment for income, blacks have higher death rates from each of these three general causes. For subjects below 65 years, the mortality gradient by income is larger than the gradient by race. The differences in mortality rates by race not accounted for by income may be due to other differences such as access to health care, type or quality of medical care, or behavioral risk factors that disadvantage black populations.
To collect information regarding knowledge about and attitudes toward cancer in a sample of adult health plan members, self-identified as Latino or Anglo.
Cross-sectional survey.
Prepaid health plan.
A random sample of 844 Latinos (mean age, 50.5 years) and 510 Anglos (51.8 years) completed the interview.
Latinos were significantly more likely than Anglos to think that sugar substitutes (58% vs 42%), bruises from being hit (53% vs 34%), microwave ovens (47% vs 23%), eating pork (31% vs 11%), eating spicy foods (15% vs 8%), breast-feeding (14% vs 6%), and antibiotics (32% vs 12%) could cause cancer (P < .001 for each). Compared with Anglos, Latinos more often misidentified constant dizziness (39% vs 25%) and arthralgias (35% vs 20%) as being symptoms of cancer. A higher proportion of Latinos believed that having cancer is like getting a death sentence (46% vs 26%), that cancer is God's punishment (7% vs 2%), that there is very little one can do to prevent getting cancer (26% vs 18%), that it is uncomfortable to touch someone with cancer (13% vs 8%), and that they would rather not know if they had incurable cancer (35% vs 23%; P < .001 for each). Latino ethnicity was a significant predictor of these knowledge and attitude items in multivariate logistic regression models adjusted for sex, education, age, employment, marital status, county of residence, and self-perceived health status.
We conclude that misconceptions about cancer are more prevalent among Latinos than Anglos and that selected attitudes about cancer among Latinos fit a cultural theme of fatalismo. These data can enable development of culturally appropriate cancer control interventions for Latinos.
This paper examines the demographic and social factors associated with differences in length of life by race. The results demonstrate that sociodemographic factors--age, sex, marital status, family size, and income--profoundly affect black and white mortality. Indeed, the racial gap in overall mortality could close completely with increased standards of living and improved lifestyles. Moreover, examining cause-specific mortality while adjusting for social factors shows that compared to whites, blacks have a lower mortality risk from respiratory diseases, accidents, and suicide; the same risk from circulatory diseases and cancer; and higher risks from infectious diseases, homicide, and diabetes. These results underscore the importance of examining social characteristics to understand more clearly the race differences in overall and cause-specific mortality.
Factors associated with the utilization of medical care by Hispanic, black Non-Hispanic, and white Non-Hispanic children were analyzed using multivariate regression techniques on a Health Interview Survey sample. The findings indicate that Medicaid coverage was the sharpest enhancer of entry into care for Hispanics and blacks, contributing significantly to the amount of physician visits. While financial factors seemed more influential determinants of physician contacts for minorities, perceived health needs appeared to be important contributors to entry into health care for white children. Such differences reveal that important racial-ethnic disparities persist with respect to physician utilization among children. Improved insurance coverage for Hispanics, particularly children of Mexican origin, is suggested as an important intervention to facilitate access for this population.
This paper considers the meaning of minority group status for the Hispanic population of the United States regarding access to medical care. A review of the relevant literature raises a number of questions concerning determinants of medical care utilization for Hispanics. They are explored using data from a national survey of health care utilization that oversampled the Hispanic population of the southwestern United States. Some indicators suggest that limited access to medical care for Hispanics in this region is associated with low levels of income, education, and health insurance coverage. Some implications of the findings for future research on Hispanics' access to medical care are presented.
To determine whether there is a racial difference in prognosis among childhood cancers.
An overall (30-year) survival analysis by race was followed by separate studies for "early" and "recent" treatment eras, defined by time points at which significantly improved outcome was demonstrated for specific tumor types. Stratified analyses were performed to adjust for recognized prognostic features.
Pediatric oncology research and treatment center.
The study included 798 black and 4507 white children with newly diagnosed malignancies treated from January 1962 through June 1992. These patients were accepted for treatment regardless of their financial status and were enrolled on disease-specific protocols.
Across the 30-year study period, black children had a significantly poorer rate of survival than white children (P < .001, log-rank test). In the early treatment era, a significant difference was seen for all forms of cancer combined (P < .001), with 10-year Kaplan-Meier estimates (+/- SE) of 37% +/- 3% for black children and 50% +/- 1% for white children. This difference largely reflected the poorer prognosis of black children with the most common childhood cancer, acute lymphoblastic leukemia. In the recent treatment era, there were no significant differences in treatment outcome by race for specific disease categories or for all forms of cancer combined. Ten-year survival rates were 67% +/- 6% for black children and 66% +/- 3% for white children, indicating a significantly greater improvement in the former group.
With equal access to effective contemporary treatment, black children with cancer fare as well as white children when treated with protocol-based therapy at a pediatric oncology research center.
To examine the extent of binge drinking by college students and the ensuing health and behavioral problems that binge drinkers create for themselves and others on their campus.
Self-administered survey mailed to a national representative sample of US 4-year college students.
One hundred forty US 4-year colleges in 1993.
A total of 17,592 college students.
Self-reports of drinking behavior, alcohol-related health problems, and other problems.
Almost half (44%) of college students responding to the survey were binge drinkers, including almost one fifth (19%) of the students who were frequent binge drinkers. Frequent binge drinkers are more likely to experience serious health and other consequences of their drinking behavior than other students. Almost half (47%) of the frequent binge drinkers experienced five or more different drinking-related problems, including injuries and engaging in unplanned sex, since the beginning of the school year. Most binge drinkers do not consider themselves to be problem drinkers and have not sought treatment for an alcohol problem. Binge drinkers create problems for classmates who are not binge drinkers. Students who are not binge drinkers at schools with higher binge rates were more likely than students at schools with lower binge rates to experience problems such as being pushed, hit, or assaulted or experiencing an unwanted sexual advance.
Binge drinking is widespread on college campuses. Programs aimed at reducing this problem should focus on frequent binge drinkers, refer them to treatment or educational programs, and emphasize the harm they cause for students who are not binge drinkers.
The Minority-Based Community Clinical Oncology Program (MBCCOP) was initiated in September 1990 to expand the National Cancer Institute's (NCI's) clinical trials network to minority populations. Institutions, organizations, and/or physician groups that had more than 50% of new cancer patients from minority groups were eligible to participate. There has been no previous evaluation of the MBCCOP.
This study was designed to describe the early implementation of the MBCCOP and identify the challenges that have emerged in developing a network aimed at increasing the participation of minority populations in clinical trials.
Data were taken from primary and secondary sources, including site visits and patient log data, that described performance of 12 MBCCOP centers initially funded in September 1990. Accrual was measured by the number of credits earned per MBCCOP for patients enrolled in research protocols for cancer treatment or for prevention and control, which includes activities such as early detection, pain control, and rehabilitation. These accrual credits, assigned by the NCI, were based on the complexity of the protocol and the amount of resources expected to be required for accrual of patients by the MBCCOP.
Data for the first 2 years of the MBCCOP showed that 344 patients were accrued to trials of treatment protocols from June 1, 1990, to May 31, 1991, and this number increased to 470 during the second accrual year, June 1, 1991, to May 31, 1992. Similarly, accrual of patients to cancer prevention and control studies increased from 256 in 1990-1991 to 423 in 1991-1992. More than 70% of the MBCCOP patients entered in studies were from minority populations. The proportion of eligible MBCCOP patients entered into treatment protocols was identical with that experienced by the initial Community Clinical Oncology Program (CCOP). Results also demonstrated that MBCCOP centers operate in an environment characterized by socio-economic decline and limited resources, both having substantial effects on the implementation of clinical trials among minorities. While minority patients are willing to participate in clinical trials, there are profound barriers involving language, logistics, and the appropriateness of available protocols. Participating physicians, nurses, and support personnel report a high level of agreement with program goals and have developed unique approaches to meeting the challenges faced in the implementation of this program.
The MBCCOPs have demonstrated their ability to participate in clinical trials. Evaluation reveals, however, that they are emerging organizations influenced by factors endemic to the community they serve and their own structure. The MBCCOPs are confronting substantial challenges, yet they provide an important link to the overall NCI clinical trials network.
Public debate about health care reform often focuses on the need for health insurance coverage, but in Latino communities many other barriers also inhibit access to medical care. In addition, basic public health services often go underfunded or ignored. Thus, health care reform efforts, nationally and in each State, must embrace a broader view of the issues if the needs of Latino communities are to be served. This report reviews and summarizes information about the mounting problems Latino communities face in gaining access to medical care. Access to appropriate medical care is reduced by numerous financial, structural, and institutional barriers. Financial barriers include the lack of health insurance coverage and low family incomes common in Latino communities. More than 7 million Latinos (39 percent) go without health insurance coverage. Latinos without health insurance receive about half as much medical care as those who are insured. Structurally, the delivery system organization rarely reflects the cultural or social concerns of the communities where they are located. Therefore, providers and patients fail to communicate their concerns adequately. These communication problems are exacerbated by the extreme shortage of Latino health care professionals and other resources available. Institutional barriers often reflect the failure to consider what it means to provide good service as well as high-quality medical care. Reducing these barriers to medical care requires modifying governmental and institutional policies, expanding the supply of competent providers, restructuring delivery system incentives to ensure primary care and public health services, and enhancing service and satisfaction with care.
Many barriers to cancer screening have been summarized and discussed. Barriers have been documented in all patient populations, but some groups such as ethnic minorities and the elderly face unique barriers. The barriers to cancer screening, are multifactorial, but much of the responsibility for change must lie with health care providers and the health care delivery industry. This is not to free the patient of all responsibility, but some significant barriers are beyond their direct control. Take, for example, socioeconomic status, disease knowledge, and culturally related perceptions and myths about cancer detection and treatment. The health care industry must do a better job identifying and overcoming these barriers. The significant effects of provider counseling and advice must not be underestimated. Patients must first be advised, and then further actions must be taken if they reject the screening advice. Did they refuse adherence to recommendations because they do not view themselves as susceptible, because of overwhelming personal barriers, or because of a fatalistic attitude toward cancer detection and treatment? If that is the case, physicians and health care institutions must attempt to change perceptions, educate, and personalize the message so that patients accept their disease susceptibility [table: see text]. Multiple patient and provider risk factors have been identified that can be used to target patients particularly at high risk for inadequate cancer screening and providers at high risk for performing inadequate screening. Research has clearly demonstrated the effectiveness of interventions to improve tracking of patient and physician compliance with screening recommendations. Further research is needed to show the impact of managed-care penetration and payer status on screening efforts, and incentive schemes need to be tested that reward institutions and third-party payers who develop uniform standards and procedures for cancer screening. The greatest responsibility lies with medical and health care institutions and those who determine the priorities of these institutions. Patient and physician barriers to mass cancer screening can be addressed by institutional support. If the quality of care delivered by providers, group practices, managed-care organizations, and HMOs is assessed with priority given to the regularity and consistency with which basic screening procedures are performed, cancer screening will undoubtedly receive greater attention in the clinic. Medical institutions must collaborate to develop standards for cancer screening with attention to the cost-effectiveness of various screening techniques to determine how limited resources can best be spent in cancer control. Such efforts should keep in mind "that a very small change implemented over a broad population may have a greater effect in absolute numbers than a large level of change applied in a small segment of the population."
This study analyzed trends in health insurance coverage in the United States from 1989 through 1996.
Data from annual cross-sectional surveys by the US Census Bureau were analyzed.
Between 1989 and 1996, the number of uninsured persons increased by 8.3 million (90% confidence interval [CI] = 7.7, 8.9 million). In 1996, 41.7 million (90% CI = 40.9, 42.5 million) lacked insurance. From 1989 to 1993, the proportion with Medicaid increased by 3.6 percentage points (90% CI = 3.1, 4.0), while the proportion with private insurance declined by 4.2 percentage points (90% CI = 3.7, 4.7). From 1993 to 1996 private coverage rates stabilized but did not reverse earlier declines. Consequently, the number uninsured continued to increase. The greatest increase in the population of uninsured [corrected] was among young adults aged 18 to 39 years; rates among children also rose steeply after 1992. While Blacks had the largest percentage increase, Hispanics accounted for 36.4% (90% CI = 32.3%, 40.5%) of the increase in the number uninsured. From 1989 to 1993, the majority of the increase was among poor families. Since then, middle-income families have incurred the largest increase. Northcentral and northeastern states had the largest increases in percent uninsured.
Despite economic prosperity, the numbers and rates of the uninsured continued to rise. Principally affected were children and young adults, poor and middle income families, blacks, and Hispanics.
This paper presents the theoretical development of a model that predicts the conditions under which Hispanics will seek preventive health care. Research trends, however, show that Hispanics tend to delay preventive care, resulting in higher morbidity and mortality rates for serious diseases such as cancer. Since many serious diseases, such as heart disease, diabetes and cancer can be prevented or treated more effectively if detected early, it is crucial to understand the motivating forces behind Hispanics' preventive health behavior. The Hispanic model, which is an extension of the Health Behavior in Cancer Prevention Model developed by Atwood (1986), includes as core variables environmental barriers to access and English language proficiency, as well as social support, health beliefs, self-efficacy, or perceived skill, health locus of control, and health values. The practical health policy applications of the model are also discussed.
The authors analyze trends in health insurance coverage in the United States from 1989 through 1997, using cross-sectional surveys by the U.S. Census Bureau (Current Population Survey) of 160,000 persons representative of the non-institutionalized population. Between 1989 and 1997, the number of people without health insurance increased by 10.1 million to 43.4 million. From 1989 to 1993, the proportion covered by Medicaid increased by 3.6 percentage points while the proportion covered by private insurance declined by 4.2 percentage points. Since then, private coverage rates have stabilized and Medicaid coverage has decreased. Consequently, the number and percent uninsured continues to rise. Young adults age 18-39 had the largest increase in the proportion uninsured, and rates among children have also risen steeply since 1992. While blacks had the largest increase in the percent uninsured, Hispanics accounted for 35.6 percent of the increase in the number uninsured. Low-income families constituted over half of the increase in the number uninsured, but since 1993 the middle income group had the largest increase in the percent uninsured. Northeastern states had the largest increase in the percent uninsured. Thus, despite economic prosperity, the numbers and rates of the uninsured continue to rise. Principally affected are children and young adults, poor and middle-income families, blacks, and Hispanics.
This article is an extension of previous work, which identified acculturation as an important variable in predicting breast self-examination (BSE) in this sample of women. Here, acculturation is further examined as an intervening factor in predicting BSE. This paper presents the association between level of acculturation to mainstream culture in the USA and the practice of BSE among a population of low-income immigrant Mexican and Puerto Rican women (n = 111) in an urban area of the Midwest in the USA. The majority of women (84.7%) scored a low level of acculturation and 85% did not practice correct BSE. The crude odds ratio indicated that Latina women having a high level of acculturation (15.3%) were twice as likely to practice correct BSE than women with low acculturation. We would suggest that a clearer understanding of the variables that define the performance of BSE will assist in enabling nurses globally to incorporate assessments in their practice that will lead to more successful interventions.
This article focuses on racial and ethnic disparities in health care, describing both absolute differences and relative changes in access to care and the use of health services among whites, blacks, and Hispanics over the past two decades. Using data from a series of three nationally representative medical expenditure surveys, the authors present descriptive statistics on disparities in access and use between minorities and whites over time. They also use multivariate analyses to isolate the extent to which health insurance and income explain those disparities. The authors find that disparities increased between 1977 and 1996, particularly for Hispanic Americans. Results also show that approximately one half to three quarters of the disparities observed in 1996 would remain even if racial and ethnic disparities in income and health insurance coverage were eliminated.
Health insurance confers important private and social benefits. Disparities in coverage among the population remain an important public policy issue. The authors focus on the health insurance status of white, black, and Hispanic Americans in both 1987 and 1996 and identify gaps in minority health care coverage relative to white Americans. They also investigate the access of workers in these groups to employment-based health insurance. Identified are factors underlying changes in the insurance status of workers during the past decade in terms of changes in population characteristics and structural shifts underlying the demand for and supply of health insurance. The authors find that while coverage has declined for workers in most racial/ethnic groups, the experience of Hispanic males appears to be unique in that changes in their characteristics as well as structural shifts account for their decline in employment-related coverage. Structural shifts dominated the changes in coverage rates for other groups.
Survivors of childhood and adolescent cancer are at risk for long-term effects of disease and treatment. The Childhood Cancer Survivor Study assessed overall and cause-specific mortality in a retrospective cohort of 20,227 5-year survivors.
Eligible subjects were individuals diagnosed with cancer (from 1970 to 1986) before the age of 21 who had survived 5 years from diagnosis. Underlying cause of death was obtained from death certificates and other sources and coded and categorized as recurrent disease, sequelae of cancer treatment, or non-cancer-related. Age and sex standardized mortality ratios (SMRs) were calculated using United States population mortality data.
The cohort, including 208,947 person-years of follow-up, demonstrated a 10.8-fold excess in overall mortality (95% confidence interval, 10.3 to 11.3). Risk of death was statistically significantly higher in females (SMR = 18.2), individuals diagnosed with cancer before the age of 5 years (SMR = 14.0), and those with an initial diagnosis of leukemia (SMR = 15.5) or CNS tumor (SMR = 15.7). Recurrence of the original cancer was the leading cause of death among 5-year survivors, accounting for 67% of deaths. Statistically significant excess mortality rates were seen due to subsequent malignancies (SMR = 19.4), along with cardiac (SMR = 8.2), pulmonary (SMR = 9.2), and other causes (SMR = 3.3). Treatment-related associations were present for subsequent cancer mortality (radiation, alkylating agents, epipodophyllotoxins), cardiac mortality (chest irradiation, bleomycin), and other deaths (radiation, anthracyclines). No excess mortality was observed for external causes (SMR = 0.8).
While recurrent disease remains a major contributor to late mortality in 5-year survivors of childhood cancer, significant excesses in mortality risk associated with treatment-related complications exist up to 25 years after the initial cancer diagnosis.
Racial and ethnic disparities in health care have been well documented, but poorly explained.
To examine the effect of access barriers, including English fluency, on racial and ethnic disparities in health care.
Cross-sectional analysis of the Community Tracking Survey (1996-1997).
Adults 18 to 64 years with private or Medicaid health insurance.
Independent variables included race, ethnicity, and English fluency. Dependent variables included having had a physician or mental health visit, influenza vaccination, or mammogram during the past year.
The health care use pattern for English-speaking Hispanic patients was not significantly different than for non-Hispanic white patients in the crude or multivariate models. In contrast, Spanish-speaking Hispanic patients were significantly less likely than non-Hispanic white patients to have had a physician visit (RR, 0.77; 95% CI, 0.72-0.83), mental health visit (RR, 0.50; 95% CI, 0.32-0.76), or influenza vaccination (RR, 0.30; 95% CI, 0.15-0.52). After adjustment for predisposing, need, and enabling factors, Spanish-speaking Hispanic patients showed significantly lower use than non-Hispanic white patients across all four measures. Black patients had a significantly lower crude relative risk of having received an influenza vaccination (RR, 0.73; 95% CI, 0.58-0.87). Adjustment for additional factors had little impact on this effect, but resulted in black patients being significantly less likely than non-Hispanic white patients to have had a visit with a mental health professional (RR, 0.46; 95% CI, 0.37-0.55).
Among insured nonelderly adults, there are appreciable disparities in health-care use by race and Hispanic ethnicity. Ethnic disparities in care are largely explained by differences in English fluency, but racial disparities in care are not explained by commonly used access factors.
A survey on factors related to breast cancer screening was completed by 179 U.S.-resident women of Mexican descent who were either Mexican born (n = 76) or U.S. born (n = 103). The U.S.-born women had significantly higher levels of income, education. and acculturation and were significantly more likely to be covered by health insurance and to receive health professional interventions such as breast self-exam (BSE) instruction. Accordingly, these U.S.-born women engaged in BSE more frequently and were more motivated to engage in other health behaviors. In comparison, the Mexican-born women reported significantly greater beliefs that breast cancer is a serious illness and that they were relatively more susceptible to this illness. For the Mexican-born women health locus of control was significantly more geared toward powerful others and chance factors. Factor differences suggest that Mexican-born women face more breast cancer screening barriers than the U.S.-born women of Mexican descent.
A disproportionate number of cancer deaths occur among racial/ethnic minorities, particularly African Americans, who have a 33% higher risk of dying of cancer than whites. Although differences in incidence and stage of disease at diagnosis may contribute to racial disparities in mortality, evidence of racial disparities in the receipt of treatment of other chronic diseases raises questions about the possible role of inequities in the receipt of cancer treatment. To evaluate racial/ethnic disparities in the receipt of cancer treatment, we examined the published literature that addressed access/use of specific cancer treatment procedures, trends in patterns of use, or survival studies. We found evidence of racial disparities in receipt of definitive primary therapy, conservative therapy, and adjuvant therapy. These treatment differences could not be completely explained by racial/ethnic variation in clinically relevant factors. In many studies, these treatment differences were associated with an adverse impact on the health outcomes of racial/ethnic minorities, including more frequent recurrence, shorter disease-free survival, and higher mortality. Reducing the influence of nonclinical factors on the receipt of cancer treatment may, therefore, provide an important means of reducing racial/ethnic disparities in health. New data resources and improved study methodology are needed to better identify and quantify the full spectrum of nonclinical factors that contribute to the higher cancer mortality among racial/ethnic minorities and to develop strategies to facilitate receipt of appropriate cancer care for all patients.