Although research has indicated a diagnosis of cancer is most often distressing for patients and their families, few studies have examined which patients access resources to manage distress or how distress levels affect resource utilization. This study explored psychosocial and supportive care resource utilization in a large cancer population at a Canadian tertiary cancer centre over a 12-month period in a usual care setting.
Patients who were new to the Tom Baker Cancer Centre completed the Distress Thermometer, the Pain and Fatigue Thermometers, the Psychological Screen for Cancer (Part C) that measures anxiety and depression, self-report questions on resources accessed and a demographic form at baseline, 3, 6 and 12 months. No feedback or specific triage to services was provided in order to observe usual care practices.
A total of 714 patients provided baseline data with 505 retained at 12 months. Twenty-four percent indicated they accessed at least one service (e.g. individual counselling, nutritionist or resource social worker) over the 12 months. Patients who were older, less educated and with lower income were less likely to access services. People who reported higher symptom burden were more likely to access services at each time point.
Overall levels of access of psychosocial services were relatively low in this population and varied by socio-demographic variables and symptom burden. Routine monitoring of psychosocial, practical and physical concerns is a potential strategy for targeting individuals who may require additional information or support in accessing available services to manage their concerns. Copyright
Prophylactic mastectomy (PM) offers 90% or greater reduction in risk of breast cancer to women at increased hereditary risk. Nonetheless, acceptance in North America is low (0-27%) and 25-50% of women electing surgery report psychological distress and/or difficulty adapting following PM. Most women also report reduced cancer worry postoperatively. Psychological consultation to aid decision-making and post-surgical coping is not routinely offered. This retrospective, cross-sectional study explored interest in and acceptability of psychological consultation for issues related to PM among 108 women who had undergone or were considering surgery.
Qualitative interviews were conducted with 26 healthy women who had undergone prophylactic mastectomy of both (bilateral) breasts (BPM), 45 women who had undergone prophylactic mastectomy of one breast (unilateral contralateral) (UPM) after diagnosis of invasive breast cancer in the other breast or ductal carcinoma in situ (DCIS), and 37 women who were considering having PM surgery.
Of the women who had undergone PM, more than half felt pre-surgical psychological consultation was advisable; nearly 2/3 thought post-surgical psychological consultation would be helpful. All women currently considering PM believed psychological consultation would aid decision-making and preparation for surgery. Strong support was reported in all groups for the emotional and informational value of speaking with a woman who had previously undergone PM.
Narratives illustrate the nature and intensity of the need for psychological support and describe preferences for the role of the psychologist. Suggestions are offered for integration of psychological services for women deciding about or adapting to PM.
The diagnosis and treatment of cancer cause considerable psychological distress and morbidity. Consequently, cancer patients have high needs for informational and emotional support and doctors vary in their ability to recognise and address these needs. This study investigated patients' attempts to gain informational and emotional support through the use of verbal cues. The sample consisted of 298 patients with heterogeneous cancers, seeing one of five medical and four radiation oncologists for the first time. Sociodemographic variables and patient anxiety and satisfaction ratings were obtained. Transcripts of the audiotaped consultations were analysed and question-asking, use of indirect cues, cue type (informational or emotional), content categories in which questions and cues occurred and doctor response (responded to or not responded to), were recorded. Patients asked a median of 11 questions and gave two cues per consultation, usually during treatment discussions. Patients gave, and doctors responded to, more informational than emotional cues. Patients gave significantly more informational cues during longer consultations. Younger and female patients gave more cues for emotional support and asked questions. No demographic variables were associated with the doctors' response to emotional and informational cues; however, consultations in which more informational cues were responded to were shorter, even when controlling for the number of cues given. Satisfaction with the consultation and patient anxiety were unaffected by doctors' responses to cues. Overall, results showed that doctors effectively identify and respond to the majority of informational cues; however, they are less observant of and able to address cues for emotional support. Cues can be addressed without lengthening the consultation or increasing patient anxiety.
An overview is provided of research into the return to work of cancer survivors, examining both the rate of return to work and factors impacting this return. A series of literature searches was conducted on MEDLINE and PSYCLIT databases for the years 1985-1999. Studies had to focus on the patient's perspective and had to include either the percentage of return to work or factors associated with return to work. Case studies and studies of cancer as an occupational disease were excluded. The search identified 14 studies. The mean rate of return to work was 62% (range 30-93%). The following factors were negatively associated with return to work: a non-supportive work environment, manual labour, and having head and neck cancer. Sociodemographic characteristics were not associated with return to work. For increasing age, associations were mixed. The increased survival rate of cancer patients warrants attention to the problems survivors may encounter upon their return to work. More systematic research is needed to establish more clearly the relative importance of factors associated with return to work of cancer survivors, which, in turn, would contribute to an increase in the labour-participation of cancer survivors.
Ovarian cancer is a life-threatening diagnosis which poses multiple challenges. The purpose of this study is to describe the quality of life (QOL) concerns and survivorship sequelae of long-term (>5 yr) early-stage ovarian cancer survivors accrued through the clinical cooperative Gynecologic Oncology Group. Forty-nine ovarian cancer survivors with a mean age at diagnosis of 55.9 yr (range 30-76) completed a telephone interview assessing QOL, psychosocial status, sexual functioning and late-effects of treatment. Results indicate that this disease-free early-stage sample enjoys a good QOL, with physical, emotional, and social well-being comparable to other survivors and same-aged noncancer cohorts. However, 20% of survivors indicated the presence of long-term treatment side effects, with a subset reporting problems related to abdominal and gynecologic symptoms, and neurotoxicity. Spiritual well-being was significantly positively associated with personal growth and mental health, and negatively associated with a declining health status. Lingering psychological survivorship sequelae included fear of follow-up diagnostic tests and fear of recurrence. Forty-three percent of respondents expressed that they would likely participate in a counseling program today to discuss psychosocial issues raised by having had ovarian cancer, and 56% stated that they would have attended a support program during the initial treatment if it had been offered. This information provides some insight into the complex survivorship relationships between quality of life, long-term physical and sexual sequelae, and factors of resilience and growth which appear to promote a sense of well-being as a result of the cancer experience.
Exercise participation has been shown to improve cardiovascular fitness and reduce psychological distress among women receiving chemotherapy and/or radiation. The purpose of this pilot study was to examine the changes in distress and body image, and fitness following exercise participation among 24 women who had been diagnosed with breast cancer within the previous 3 years. The women were randomly assigned to participate in a 12-week supervised aerobic exercise program in a hospital setting or a wait-list control group. Assessments of distress and body image were conducted at pre- and post-treatment. Data showed that the women in the exercise group improved significantly in body image (Physical Condition and Weight Concerns subscales) vs control group participants at post-treatment. Reductions in distress were also noted in the exercise group, but these were nonsignificant. At post-treatment, there were modest improvements in fitness in the exercise group.
The 2008 Institute of Medicine's Report, Cancer Care for the Whole Patient (IOM, 2008), recommends screening cancer patients for distress. Cancer programs throughout the United States are struggling to achieve this standard. The IOM report indicates that only 14% of 1000 randomly selected American Society of Clinical Oncology (ASCO) members and eight of 15 National Comprehensive Cancer Network (NCCN) centers reported screening for distress in at least some of their patients [J Natl Compr Cancer Netw 2007;5:99-103]. Without adequate screening, distress often goes unnoticed by cancer professionals and there is little information about the prevalence of distress. The main objective of this article is to present data from 1281 distress screenings completed by patients treated within a community cancer center. Specifically, this article reports the intensity of distress, frequency of problem endorsement, and requests for specific psychosocial providers by cancer patients.
Medical and radiation oncology patients completed a distress screener before their first physician appointment. The screening instrument included the Distress Thermometer, a symptom checklist, and a list of psychosocial providers that the patient could request to meet.
Thirty-two percent of this sample rated distress above the threshold level. Worry was the most common problem endorsed followed by financial issues. Emotional concerns were endorsed by 59% of the sample. The cancer dietitian was the psychosocial professional most frequently requested by patients.
Distress screening can be accomplished within a community cancer center but the provision of psychosocial services is difficult given the high volume of need.
Many studies have reported that cancer patients who show difficulties maintaining perceptions of control report more psychological distress than patients who are higher in control. Besides perceptions of control, feelings of illness uncertainty have also been regarded as a predictor of psychological distress. Given these strong relationships between perceptions of low control and high illness uncertainty and psychological distress, the present study examined whether an informational self-management intervention (booklet) could moderate this relationship. The booklet contained general and specific information about cancer and cancer treatment, information about possible coping strategies, and social comparison information, which consisted of short stories of other patients. Prior to radiotherapy, 209 patients with cancer completed baseline measures, including control and illness uncertainty. After completing radiotherapy, patients were randomly allocated to receive either a booklet (experimental group; N=103) or no booklet (control group; N=106). Three months after the intervention, aspects of psychological distress were assessed, including tension, anger, depression, fatigue and vigour. The results supported our hypotheses and suggested that a self-management intervention is relevant in reducing the relationship between control and illness uncertainty before radiotherapy and psychological distress after radiotherapy. This seems important, especially for high-risk patients who perceive little control and much illness uncertainty.
This pilot study examines whether hormone therapy for breast cancer affects cognition. Patients participating in a randomised trial of anastrozole, tamoxifen alone or combined (ATAC) (n=94) and a group of women without breast cancer (n=35) completed a battery of neuropsychological measures. Compared with the control group, the patients were impaired on a processing speed task (p=0.032) and on a measure of immediate verbal memory (p=0.026) after controlling for the use of hormone replacement therapy in both groups. Patient group performance was not significantly related to length of treatment or measures of psychological morbidity. The results showed specific impairments in processing speed and verbal memory in women receiving hormonal therapy for the treatment of breast cancer. Verbal memory may be especially sensitive to changes in oestrogen levels, a finding commonly reported in studies of hormone replacement therapy in healthy women. In view of the increased use of hormone therapies in an adjuvant and preventative setting their impact on cognitive functioning should be investigated more thoroughly.
Physician-patient communication is a critical factor for comprehensive care in oncology. Although a number of studies have been carried out in Northern Europe and the US on this subject, no data are available in Southern European countries. As a part of a multicenter Southern European Psycho-Oncology study (SEPOS), the present investigation was conducted to examine communication skills and related variables (i.e. psychosocial orientation, and burnout) among 125 physicians from Italy, Portugal, and Spain. The Self-Confidence in Communication Skills (SCCS) scale was given to assess physicians' perception of their communication skills and the Expected Outcome of Communication (EOC) scale was administered to examine the physicians' expectations about the effects of communicating with their patients. Doctors' psychosocial orientation was measured by using the Physician Belief Scale (PBS) and burnout was measured by using the Maslach Burnout Inventory (MBI). Although the physicians reported receiving minimal training in communication during their education, they tended to perceive themselves as skilled in patient communication, apart from some areas (e.g. dealing with denial, managing uncertainty, assessing anxiety and depression, and promoting patient-family openness). Low psychosocial orientation and burnout symptoms (i.e. emotional exhaustion, depersonalization, and poor personal accomplishment in their job) were associated with lower confidence in communication skills and higher expectations of a negative outcome, following physician-patient communication. The results suggest that there is a need for training cancer physicians in communication and for increasing a more definite psychosocially oriented approach in cancer care in Mediterranean countries.
This research investigated psychological characteristics associated with delay in seeking help for symptoms of rectal cancer. Sixty nine subjects reconstructed pivotal events beginning with symptom onset and ending with medical consultation, and completed the Temperament and Character Inventory (TCI) and the State-Trait Anxiety Inventory (STAI). The mean delay time was around 6 months, with about 1 out of 6 subjects waiting one year or more. Subjects estimated the lengths of two sequential segments of total time to consultation: (1) Symptom Appraisal time (from symptom onset to recognition of possible seriousness), and (2) Action Appraisal time (from recognition of seriousness to medical consultation). Symptom Appraisal time accounted for over two-thirds of total time and was associated with low scores on the TCI Harm Avoidance scale (TCI-HA), indicating dispositional insensitivity to threat, and marginally associated with less education and younger age. Action Appraisal time was not associated with any demographic or psychological variables. Low TCI-HA scores were also associated with lower likelihood of previous cancer screening, and with better judgments of premorbid health. Low STAI Trait scores were associated with better judgments of premorbid health and fewer doctor visits. Results are discussed regarding the importance of understanding dispositional characteristics related to health behavior.
This systematic review aims to assess the psychological impact of mammographic screening on women with a family history of breast cancer. Women with a family history, and hence increased risk, of breast cancer are known to experience higher levels of anxiety about cancer. They are also often offered screening from an earlier age. The psychological consequences of screening are therefore of particular importance for this group of women. A comprehensive search of 4 electronic databases was conducted from 1982 to 2003, combining sets of terms relating to (1) breast screening or mammography (breast screen*; mammogra*), (2) psychological impact (adverse effects; anxi*; distress; nervous; psych*, psychological consequences; stress; worry) and (3) family history. Reference lists from relevant papers were examined for additional papers. The review identified seven papers from four countries. Overall, the findings indicate that, similar to women in the general population, most women with a family history do not appear to experience high levels of anxiety associated with mammographic screening. Although women who are recalled for further tests do experience increased anxiety the levels appear to be no greater than for women without a family history. We conclude that further research on this topic is required--this should include studies designed specifically to consider both the negative and positive impact of mammographic screening on women with a family history, using validated measures of anxiety and worry in combination with qualitative research.
The purpose of this study is to determine how to disclose bad news to patients with cancer in China.
One hundred fifty pairs of hospitalized patients and their family members were investigated using a self-designed questionnaire.
More patients than their families believed that patients should be informed of their illnesses (98.0% vs. 66.7%, p < 0.001), that patients should be informed of their condition completely (69.3% vs. 18.7%, p < 0.001), that patients should be informed as soon as the diagnoses were confirmed (49.3% vs. 14.7%, p < 0.001), and that patients should be informed by doctors (55.3% vs. 10.7%, p < 0.001). κ coefficients between patients and their families on "whether, when and who to disclose" ranged from -0.084 to 0.004. Univariate logistic analyses demonstrated that farmer patients and patients with lower education and lower income were less likely to prefer to be informed completely; farmer patients and patients without an intended curative operation history were less likely to prefer to be informed immediately and directly by doctors. Multivariate analyses showed that farmer patients were less likely to prefer to be informed completely, immediately, and directly by doctors.
There was poor or slight concordance in disclosure preferences between patients with cancer and their families. More patients than their families wanted to be informed completely, immediately, and directly by doctors. Farmer patients with cancer were less likely to prefer to be informed completely, immediately, and directly by doctors.
The mini-Mental Adjustment to Cancer Scale is designed to assess psychological responses to cancer diagnosis and is widely used in research and clinical practice. Recent evidence demonstrates adequate convergent validity but inconsistent internal consistency and factor structure. This study aimed to provide a parsimonious factor structure with clinical utility.
Repeated measures data were collected from 160 cancer patients (mixed illness type) at diagnosis and 3-month follow-up. Principal axis factoring with oblimin rotation was used. The number of factors was decided using parallel analysis. The resultant factors were compared against the recommended five-factor structure on internal consistency (Cronbach's alpha) and test-retest reliability and convergent validity (Pearson's correlation).
Parallel analysis suggested that a four-factor model optimally fits these data. Two of these-cognitive avoidance and fighting spirit-are equivalent to the original factor structure. Redistribution of the remaining items resulted in factors of cognitive distress and emotional distress. Internal consistency and test-retest reliability of the new four-factor structure are equivalent, but convergent validity is much improved overall when compared with a five-factor structure, with the exception of the fighting spirit factor.
The revised four-factor structure represents a more psychometrically sound measure of psychological adjustment in the current dataset. Findings related to the larger cognitive distress factor are congruent with data from foreign-language validation studies. The brevity of this improved measure may make it easier to administer in the clinical setting.
The experience of cancer can be understood as a psychosocial transition, producing both positive and negative outcomes. Cognitive processing may facilitate psychological adjustment.
Fifty-five post-treatment, colorectal cancer survivors (M=65.9 years old; SD=12.7), an average of 13 months post-diagnosis, were recruited from a state cancer registry and completed baseline and 3-month questionnaires assessing dispositional (social desirability), cognitive processing (cognitive intrusions, cognitive rehearsal), and psychological adjustment variables (posttraumatic growth (PTG), posttraumatic stress disorder (PTSD) symptomatology, depression, anxiety, positive affectivity).
PTSD symptomatology was positively associated with depression, anxiety, and negatively associated with positive affectivity. In contrast, PTG scores were unrelated to PTSD symptomatology, depression, anxiety, and positive affectivity. In addition, PTG was independent of social desirability. Notably, after controlling for age at diagnosis and education, multiple regression analyses indicated that cognitive processing (intrusions, rehearsal) was differentially predictive of psychological adjustment. Baseline cognitive intrusions predicted 3-month PTSD symptomatology and there was a trend for baseline cognitive rehearsal predicting 3-month PTG.
Additional research is needed to clarify the association between PTG and other indices of psychological adjustment, further delineate the nature of cognitive processing, and understand the trajectory of PTG over time for survivors with colorectal cancer.
The economic impact on individuals with breast cancer is not well understood. We sought to identify and describe the direct and indirect economic losses to breast cancer survivors in Australia. A longitudinal, population-based study of 287 women was used to explore economic outcomes (costs and lost income) for women with breast cancer 0-18 months post-diagnosis. Survey methods collected data on out-of-pocket costs, care-giving support, paid and unpaid work reductions, and perceptions from participants on these financial impacts. Bootstrapping was used to estimate 95% confidence intervals around means. Data were sub-grouped by cost type, age category and disease severity. Lost income, health service expenditures and lost unpaid work were the greatest sources of economic burden. Women with positive lymph nodes reported significantly higher costs than those with negative lymph nodes (US$6674 versus US$3533, p<0.001), and younger women (< or =50 years) with positive lymph nodes experienced costs 80% greater than older women (US$8880 versus US$4937, p<0.001). Economic costs related to breast cancer may continue to affect women 18 months post-diagnosis. Economic research adds an important dimension for understanding the impact of breast cancer, and findings may be used to help improve supportive care services for women and families confronted by this disease.
To determine the effect of exercise on quality of life in (a) a randomized controlled trial of exercise among recently diagnosed breast cancer survivors undergoing adjuvant therapy and (b) a similar trial among post-treatment survivors.
Fifty newly diagnosed breast cancer survivors were recruited through a hospital-based tumor registry and randomized to a 6-month, home-based exercise program (n=25) or a usual care group (n=25). In a separate trial, 75 post-treatment survivors were randomized to a 6-month, supervised exercise intervention (n=37) or to usual care (n=38). Participants in both studies completed measures of happiness, depressive symptoms, anxiety, stress, self-esteem, and quality of life at baseline and 6 months.
Forty-five participants completed the trial for newly diagnosed survivors and 67 completed the trial for post-treatment survivors. Good adherence was observed in both studies. Baseline quality of life was similar for both studies on most measures. Exercise was not associated with quality of life benefits in the full sample of either study; however exercise was associated with improved social functioning among post-treatment survivors who reported low social functioning at baseline (p<0.05).
Exercise did not affect quality of life in either recently diagnosed or post-treatment breast cancer survivors; however this may be due in part to relatively high baseline functioning among participants in both studies. Strategies for future research include limiting enrollment to survivors who report reduced quality of life on screening questionnaires and targeting survivor subgroups known to be at particular risk for quality of life impairment.
The aim of the study was to assess symptoms of depression and anxiety in patients with head and neck cancer up to 18 months after radiotherapy.
Prospective observational study of consecutive head and neck outpatients was conducted at a tertiary cancer centre (n = 101). Eligibility included diagnosis of cancer in the head and neck region, where the patient agreed to radiotherapy with curative intent. Data were collected before commencement of radiotherapy and 3 weeks and 18 months after completion. Symptoms of depression and anxiety were assessed by the Hospital Anxiety and Depression Scale. Tumour/treatment-related physical symptoms were assessed using the ‘Additional Concerns’ subscale of the Functional Assessment of Chronic Illness Therapy for Head and Neck Cancer.
The prevalence of identified probable cases of depression was 15% at baseline, increasing to 29% 3 weeks post-treatment, falling to 8% at 18-month follow-up. The number of probable cases of anxiety was 20% at baseline, 17% at 3 weeks post-treatment and 22% at 18-month follow-up. Depression scores significantly increased from baseline to 3 weeks post-treatment and decreased at 18-month follow-up. Variability in depression scores was accounted for by tumour/treatment-related physical symptoms. Anxiety scores significantly decreased between baseline and 3-week post-treatment and increased at 18-month follow-up. Younger age and more tumour/treatment-related physical symptoms predicted anxiety scores.
The rates of depression in head and neck cancer patients increase following cancer treatment and are related to tumour/treatment-related physical symptoms. Anxiety levels are higher pre-treatment, lower immediately following cancer treatment but rise to near pre-treatment levels more than a year after completion of cancer treatment. Copyright
To investigate the readiness of patients to address emotional needs up to 18 months following a diagnosis of breast, lung or prostate cancer.
Patients (N = 42) attending pre-treatment, treatment and follow-up clinics were provided with information designed to help them manage their emotional reactions to cancer. Patients were interviewed 3–4 weeks later about their emotional experience of cancer and their attitudes towards managing emotional problems. Qualitative data analysis followed a constant comparative approach.
Patients early in the cancer trajectory, who had not yet been engaged in chemotherapy or radiotherapy, described emotional distress as a temporary and understandable reaction that did not warrant professional intervention. They valued knowing that support was available, but did not want to use it, and were reluctant to acknowledge or address emotional needs. Conversely, patients currently or recently engaged in treatment readily acknowledged their emotional needs and welcomed help to address these.
Drawing on social cognitive and other theories, we suggest that engagement in physical treatment and care allows patients to address emotional needs following a cancer diagnosis. Guidance that emotional needs should routinely be assessed and addressed at key points in the cancer trajectory should therefore be implemented cautiously when patients are only recently diagnosed; psychological intervention may be less appropriate at this time than later. Copyright
The Brief Symptom Inventory-18 (BSI-18) is an 18-item symptom checklist used as a brief distress screening in cancer and other medical patients. This study evaluated the validity of the BSI-18 in a sample of 221 adult survivors of childhood cancers ages 18-55 (median = 26). Validity of the BSI-18 was compared to the Symptom Checklist-90-Revised (SCL-90-R). Results indicated the BSI-18 scales had acceptable internal consistency (alpha >0.80) and were highly correlated with the corresponding SCL-90-R subscales (correlations from 0.88 to 0.94). When subjects were classified as case positive (significantly distressed) using the BSI-18 manual case-rule, classification agreement with the SCL-90-R was poor as evidenced by low sensitivity (41.78%). An alternative BSI-18 case-rule previously developed for cancer patients using the General Severity Index (GSI; GSI t-score >or=57) demonstrated better sensitivity (83.54%). ROC analysis indicated the BSI-18 had strong diagnostic utility relative to the SCL-90-R (AUC = 0.98) and several possible GSI cut-off scores were evaluated. The optimal cut-of score was a t-score >or=50 which had a sensitivity of 97.47% and a specificity of 85.21%. Results support use of the BSI-18 with adult survivors of childhood cancer but indicate an alternative case-rule must be used.
The purpose of this investigation was to explicate the content of primary adjuvant treatment consultations in breast oncology and examine the predictive relationships between patient and oncologist consultation factors and patient satisfaction with communication.
The recorded consultations of 172 newly diagnosed breast cancer patients from four Canadian cancer centers were randomly drawn from a larger subset of 481 recordings and examined by three coders using the Medical Interaction Process System (MIPS); a system that categorizes the content and mode of each distinct utterance. The MIPS findings, independent observer ratings of patient and oncologist affective behavior, and derived consultation ratios of patient centeredness, patient directedness, and psychosocial focus, were used to predict patient satisfaction with communication post-consultation and at 12-weeks post-consultation.
Biomedical content categories were predominant in the consultations, accounting for 88% of all utterances, followed by administrative (6%) and psychosocial (6%) utterances. Post-consultation satisfaction with communication was significantly higher for older patients, those with smaller primary tumors and those with longer consultations. Smaller tumor, lack of patient assertiveness during the treatment consultation and having the consultation with a radiation rather than medical oncologist were significantly predictive of greater satisfaction at 12-weeks post-consultation.
Adjuvant treatment consultations are characterized by a high degree of information-giving by the physician, a predominance of biomedical discussion and relatively minimal time addressing patients' psychosocial concerns. Controlled trials are needed to further identify and address the contextual features of these consultations that enhance patient satisfaction.
In this paper we examine health among breast cancer 5-year survivors. We raise two questions: (1) how do the health level of this survival group compare to the health level of the general population; and (2) how have the health levels among these survivors changed over time. We found that 5-year breast cancer survivors assess their health lower than the general population, and that having being diagnosed in a later year increases health compared to having received the diagnosis at an earlier point in time. This implies that screening and treatment of breast cancer have been successful. Further, we did not find any statistically significant effect of the length of the time spell since diagnosis on health. One reason for this may be that those additional individuals surviving over time as a result of improved treatment therapies have on average lower health levels than those who survived before more efficient medical technologies were introduced.
We explored the impact of cancer diagnosis on the employment status of 46 312 working-aged people with cancer, alive on 31 December 1997 in Finland, and an equal number of age- and gender-matched referents. In general, 50% of the cancer patients were employed, in comparison to 55% of their referents. People with cancer were slightly less often employed, mainly because of their higher retirement rate: 34% of the cancer patients and 27% of the referents had retired. People with lung cancer as well as those with cancer of the nervous system were less likely to be employed. Our results suggest that cancer diagnosis does not usually lead to unemployment or early retirement, even though the employment rate of the people with cancer varied greatly according to the cancer site. Early retirement is common among people with highly disabling cancer or poor prognosis, but in general, the employment of cancer survivors seems optimistic.
Breast cancer and its treatment introduce numerous physiologic, psychological, social, and economic stressors to a woman with the diagnosis. Allostatic load, a composite score of biomarkers representing physiologic dysregulation, may serve as a measure of the biological burden of breast cancer. This study investigates the association between breast cancer and allostatic load scores by comparing allostatic load scores in those with a history of breast cancer to those without, stratified by race.
Black and white women aged 35 to 85 were analyzed using the data from NHANES 1999–2008 (n = 4875 women, of which 188 women had a history of breast cancer). Stratified by race, we ran multivariate analyses with history of breast cancer as a predictor for elevated allostatic load while adjusting for other potentially confounding variables.
Although a history of breast cancer was not associated with elevated allostatic load in white women, it was significantly associated with elevated allostatic load in black women after adjusting for age, income, education, insurance type, smoking status, alcohol intake, and physical activity [Odds Ratio (OR) 2.08 (95%CI 1.02, 4.22)]. Furthermore, an interaction between black and having a history of breast cancer was found to be significant in predicting elevated allostatic load scores after adjusting for demographic, behavioral, and comorbidity characteristics.
These results suggest that the biological toll of breast cancer may be greater in black women than white women. Copyright
The Cancer Behavior Inventory (CBI), a measure of self-efficacy for coping with cancer, was revised by adding a new stress management scale and reducing its length from 43 to 33 items. The 33-item CBI was administered to 280 cancer patients. A principal factors analysis with varimax rotation yielded the hypothesized seven factors (alphas in parentheses): (1) maintenance of activity and independence (alpha=0.86), (2) seeking and understanding medical information (alpha=0.88), (3) stress management (alpha=0.86), (4) coping with treatment-related side-effects (alpha=0.82), (5) accepting cancer/maintaining positive attitude (alpha=0.86), (6) affective regulation (alpha=0.81), and (7) seeking support (alpha=0.80). The alpha for the entire CBI was 0.94, the test-retest (1 week) reliability coefficient was 0.74, and correlations with measures of quality of life and coping supported its validity. The CBI may be useful to researchers and clinicians and can be integrated into a self-regulation model of coping.
The diagnosis and subsequent treatment of prostate cancer is followed by a range of significant disease specific and iatrogenic sequelae. However, the supportive care needs of men with prostate cancer are not well described in the literature. The present study assesses the supportive care needs of men with prostate cancer who are members of prostate cancer self-help groups in Queensland, Australia. In all, 206 men aged between 48 and 85 years (mean=68) completed the Supportive Care Needs Survey (SCNS) (62% response). The SCNS is a validated measure assessing perceived need in the domains of psychological needs, health system and information needs, physical and daily living needs, patient care and support, and sexuality. Items assessing need for access to services and resources were also included. One third of the sample reported a moderate to high need for help for multiple items in the sexuality, psychological and health system and information domains. Younger men reported greater need in the sexuality domain; living in major urban centres was predictive of greater psychological need; being closer to the time of diagnosis was related to greater need for help in the physical and daily living domain; having prostate cancer that is not in remission, having received radiation therapy, and lower levels of education were predictive of greater need for help in patient care and support. Of the total sample, 55% of men had used alternative cancer treatments in the past 12 months, with younger and more educated men more likely to use alternative therapies. Interventions in sexuality, psychological concerns and informational support are priorities for men with prostate cancer.
No population-based studies conducted outside Western countries have identified determinants of hospice utilization for all ages and cancer groups.
To evaluate associations between hospice utilization in the last year of life and patient demographics, disease characteristics, physician specialty, hospital characteristics, and availability of healthcare resources at the hospital and regional levels in Taiwan.
Retrospective cohort study using administrative data among 204, 850 Taiwanese cancer decedents, 2001-2006.
Rates of hospice utilization increased significantly (12.99-17.24%) over the study period. Hospice utilization was more likely for cancer patients who were female; over 65 years old; currently or formerly married; with ≤1 concurrent disease; diagnosed with breast cancer or cancer having a poorer prognosis; with distant metastasis, and longer illness duration (>2 months since diagnosis); receiving care in a teaching hospital or hospital with an inpatient-hospice unit; and receiving care in a region with greater density of inpatient-hospice beds. However, patients with hematological malignancies and esophageal cancer were less likely to use hospice care.
Despite the 1.33 times increase in hospice utilization among cancer patients who died from 2001 to 2006, only one in six Taiwanese cancer decedents used hospice care in their last year of life. Our findings regarding determinants of hospice utilization should be used by healthcare professionals and policy makers to guide the development of policies and interventions that facilitate prognosis disclosure and EOL care discussions between physicians and patients, especially younger patients, to help the transition from curative to palliative care.
The aim of this prospective cohort study was to identify factors associated with fatigue in women with breast cancer who attended a 6-day rehabilitation course. Furthermore, to investigate level of fatigue 1 year after the rehabilitation course, after accounting for baseline fatigue levels.
Between 2002 and 2005 we included 775 women with breast cancer and measured fatigue, emotional functioning and insomnia using the EORTC subscales and sociodemographics from a baseline questionnaire prior to participation in the rehabilitation course. Information on disease-specific and treatment factors was obtained from a nationwide clinical database. From the 12-month follow-up questionnaire we obtained level of fatigue. We estimated the influence of factors on the relative risk for a 10-points increase in fatigue score in generalised linear models. For the analysis of fatigue at 12 months follow-up we added fatigue level at baseline and relapse since baseline.
Higher tumour grade and insomnia predicted higher levels of fatigue, whereas better emotional functioning was associated with lower levels. After 12 months of follow-up fatigue levels were associated with level at baseline and with emotional functioning, insomnia, relapse and being on sick leave or unemployed. Emotional level, insomnia and high grade were associated with level of fatigue. After 1 year, a high level at baseline, insomnia and low emotional functioning was associated with greater fatigue.
These longitudinal results support that cancer-related fatigue can be a persistent phenomenon and that focus on psychological distress and sleeping problems might be beneficial in these women.
This systematic review aimed to evaluate the level of evidence of contemporary peer-reviewed literature published from 2004 to 2011 on the psychosocial impact of lymphedema.
Eleven electronic databases were searched and 1311 articles retrieved; 23 met inclusion criteria. Twelve articles utilized qualitative methodology and 11 used quantitative methodology. An established quality assessment tool was used to assess the quality of the included studies.
The overall quality of the 23 included studies was adequate. A critical limitation of current literature is the lack of conceptual or operational definitions for the concept of psychosocial impact. Quantitative studies showed statistically significant poorer social well-being in persons with lymphedema, including perceptions related to body image, appearance, sexuality, and social barriers. No statistically significant differences were found between persons with and without lymphedema in the domains of emotional well-being (happy or sad) and psychological distress (depression and anxiety). All 12 of the qualitative studies consistently described negative psychological impact (negative self-identity, emotional disturbance, and psychological distress) and negative social impact (marginalization, financial burden, perceived diminished sexuality, social isolation, perceived social abandonment, public insensitivity, and non-supportive work environment). Factors associated with psychosocial impact were also identified.
Lymphedema has a negative psychosocial impact on affected individuals. The current review sheds light on the conceptualization and operationalization of the definitions of psychosocial impact with respect to lymphedema. Development of a lymphedema-specific instrument is needed to better characterize the impact of lymphedema and to examine the factors contributing to these outcomes in cancer and non-cancer-related populations. Copyright
The purpose of this study was to examine the role of spirituality in terminally ill cancer patients who volunteer for clinical trials of experimental agents. Information about spirituality (FACIT-Sp), quality of life (FACT-G), awareness of prognosis, and decision-making preferences was obtained from 162 advanced cancer patients who volunteered for phase I trials. In a multivariable model, phase I patients had slightly higher levels of spirituality (p<0.001) than a group of 156 advanced cancer patients who were not participants in phase I trials. For the phase I patients, spirituality was positively associated with quality of life (Spearman rho=0.36, p<0.001). There was little association between either spirituality or religious problem-solving style and phase I patients' awareness of their prognosis or decision-making preferences. One phase I patient who said, 'I put faith in doctors and God,' expressed these patients' willingness to trust both God and medicine.
The inaugural President's Plenary was held at the 2012 International Psycho-oncology Society's World Congress in Brisbane to provide a platform for dissemination of important initiatives and achievements of interest to cancer professionals globally. The vision of the International Psycho-oncology Society – clarified and defined in 2004 – is that all cancer patients and their families throughout the world should receive optimal psychosocial care at all stages of disease and survivorship. Recent initiatives have been driven by the need to see psychosocial care available as a seamless part of holistic multidisciplinary quality cancer care and life-extending lifestyle changes promoted and supported through the expertise of behavioural and social scientists. In keeping with World Health Organization targets that there is ‘no health without mental health’, cancer health must include mental health. This is in line with the patients' declaration to ‘See us – not our disease’. The aim is to ensure that within the next decade, psychosocial care is acknowledged as a vital part of the patient journey and accepted globally as good practice within cancer care. The President's Plenary session covered the need for the following:
The aim is to encourage dialogue between all cancer professionals and patient representatives to progress these targets; everyone has a voice. Copyright
The purpose of this paper was to determine if providing patient specific Quality of Life (QL) information to clinic staff before a clinic appointment improved patient care in a lung cancer outpatient clinic. Patients were sequentially assigned to either a usual care control group or the experimental group, which completed a computerized version of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire in order to provide the clinic staff with QL information prior to the clinic appointment. The control group completed the EORTC QLQ-C30 paper version after the clinic appointment. Outcome measures were patient satisfaction, the degree to which issues identified on the QL questionnaire were addressed in the appointment, and a chart audit, which measured charting of QL issues and actions taken by the clincian relating to QL. In the experimental group, more QL issues identified by the patient on the EORTC QLQ-C30 were addressed during the clinic appointment than in the control group. As well, marginally more categories were charted and a trend towards more actions being taken was seen in the experimental group. Patients reported being equally and highly satisfied with the treatment in both groups. The clinical implication is that the computerized administration of the EORTC QLQ-C30 questionnaire and providing staff with a report highlighting patient-specific QL deficits is a simple, time-effective and acceptable means of improving patient-provider communication in a busy outpatient clinic. Large trials studying its effectiveness in different patient populations and regions would further elucidate the nature of this effect and potentially improve the overall quality of care that patients receive.
Previous research has suggested that endocrine therapy is associated with cognitive limitations in breast cancer survivors (BCS); this study examined the relationship in employed BCS, an average of three years post-primary treatment.
77 BCS with past or current exposure to tamoxifen or aromatase inhibitors and 56 BCS with no history of endocrine therapy completed self-report measures of cognitive function, anxiety, depression, and fatigue as well as an online neurocognitive battery.
Exposure to endocrine therapy was not related to scores on the objective measures, but moderately related to perceived attentional problems at work (β = -0.20; CI(0.95) = -2.75, -0.25) and perceived cognitive functioning in overall life (β = 0.17; CI(0.95) = 0.33, 11.47) in excess of what could be explained by symptom burden measures. No differences were reported between groups on symptom burden measures. Symptoms of physical fatigue, depression, and anxiety were positively associated with self-report of general cognitive limitations (R(2) change range: 0.28-0.37), and symptoms of depression and anxiety were positively associated with perceived cognitive limitations at work (R(2) change range: 0.21-0.28).
Symptoms of depression, anxiety, and fatigue should be screened for and treated in BCS, as an approach to mitigating perceived cognitive limitations. However, healthcare providers should be aware that cognitive limitations exist in excess of what can be associated with symptom burden, and may be related to endocrine therapy and other cancer treatments.
This paper investigated educational achievement, employment status, living situation, marital status and offspring in 500 Dutch long-term young adults survivors of childhood cancer (age range, 16-49 years, 47% female). The results were compared with a reference group of 1092 persons with no history of cancer (age range, 15-33 years, 55% female). The impact of demographic and medical characteristics on psychosocial adjustment was studied. All participants completed a self-report questionnaire. The results showed that, although many survivors are functioning well and leading normal lives, a subgroup of survivors were less likely to complete high-school, to attain an advanced graduate degree, to follow normal elementary or secondary school and had to be enrolled more often on learning disabled programs. The percentage of employed survivors was lower than the percentage of employed controls in the comparison group, but more survivors were student or homemaker. Survivors had lower rates of marriage and parenthood, and worried more about their fertility and the risk of their children having cancer. Survivors, especially males, lived more often with their parents. Cranial irradiation dose <or=25 Gy was an important independent prognostic factor of lower educational achievement. Survivors with a history of brain/CNS tumours had a higher risk of being single than survivors with a diagnosis of leukaemia/non-Hodgkin lymphoma. These results indicate that important aspects of life are affected in a substantial number of persons who have been diagnosed with cancer during childhood or adolescence.
This paper aims to investigate the effect of socioeconomic status, as measured by education, on the survival of breast cancer patients treated on 10 studies conducted by the Cancer and Leukemia Group B.
Sociodemographic data, including education, were reported by the patient at trial enrollment. Cox proportional hazards model stratified by treatment arm/study was used to examine the effect of education on survival among patients with early stage and metastatic breast cancer, after adjustment for known prognostic factors.
The patient population included 1020 patients with metastatic disease and 5146 patients with early stage disease. Among metastatic patients, factors associated with poorer survival in the final multivariable model included African American race, never married, negative estrogen receptor status, prior hormonal therapy, visceral involvement, and bone involvement. Among early stage patients, significant factors associated with poorer survival included African American race, separated/widowed, post/perimenopausal, negative/unknown estrogen receptor status, negative progesterone receptor status, >4 positive nodes, tumor diameter >2 cm, and education. Having not completed high school was associated with poorer survival among early stage patients. Among metastatic patients, non-African American women who lacked a high school degree had poorer survival than other non-African American women, and African American women who lacked a high school education had better survival than educated African American women.
Having less than a high school education is a risk factor for death among patients with early stage breast cancer who participated in a clinical trial, with its impact among metastatic patients being less clear. Post-trial survivorship plans need to focus on women with low social status, as measured by education. Copyright
This study aims to explain bodily pain using the Sprangers and Schwartz theoretical model (1999) on quality of life (QL) and response shift in its entirety. Response shift refers to the phenomenon that the meaning of a person's self-evaluation changes over time. In this model, response shift mediates effects of changes in health status (catalysts), stable characteristics of the person (antecedents), and coping mechanisms (mechanisms) on QL.
Cancer patients (202) were assessed prior to and 3 months following surgery. Measures were for catalysts: type of operation and possibility of tumor resection; for antecedents: age, duration of pain, optimism, and rigidity; for mechanisms: post-traumatic growth, social comparisons, social support, denial, and acceptance; and for QL: bodily pain; for response shift: the pretest-minus-thentest bodily pain score, further referred to as recalibration response shift. Structural equation modeling and sequential regression analyses were used.
The final model reached close fit (RMSEA = 0.03; 90% CI = 0.000-0.071; χ2 (18) = 21.13; p = 0.27). Significant effects were found for catalysts on mechanisms, antecedents on mechanisms, mechanisms on response shift, and response shift on bodily pain. Four extra model effects had to be permitted. Using sequential regression analysis, recalibration response shift added 4.4% to the total amount of 29.8% explained variance of bodily pain.
Many effects as hypothesized by the model were found. Recalibration response shift had a unique albeit small contribution to the explanation of bodily pain.
While research exists on the well-being of women during a specific phase of breast cancer, little research exists in which researchers utilized the same instruments to examine differences in women's well-being, based on the phase of their breast cancer. Using a trajectory framework, the purpose of this study is to examine the differences in the physical and social well-being of women during the following breast cancer states: newly diagnosed, adjuvant therapy, stable disease and recurrent disease. The convenience sample consisted of 35 women newly diagnosed with breast cancer, 52 women with breast cancer undergoing adjuvant therapy, 84 women whose breast cancer was considered stable and 64 women with recurrent breast cancer. Participants completed a packet of questionnaires which contained a demographic questionnaire, Short Form-36 (SF-36) Health Survey, a researcher designed (RD) questionnaire, Cancer Rehabilitation Evaluation System-Short Form (CARES-SF) and the Brief Symptom Inventory (BSI). Descriptive statistics, analysis of variance, and general linear F-tests were used to analyze the data. Differences were found across phases of disease on various subscales, including those representing perceived health states, overall impact, medical interactions, physical function, role function, fatigue, pain, social function and satisfaction with health. No significant differences were found between groups on the BSI subscales with the exception of somatization, global psychosocial measures, sexual and marital relation subscales. While individuals with recurrent disease often experienced more difficulties with their well-being than women in the other groups, women newly diagnosed and in the adjuvant group experienced more difficulties in select areas of well-being when compared with women in the stable group. Health care professionals need to recognize differences between groups to better meet the needs of patients with a breast cancer diagnosis.