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ABSTRACT: Transition to adult services for children and youth with special health care needs (CYSHCN) has emerged as an important event in the life course of individuals with disabilities. Issues that interfere with efficient transition to adult health care include the perspectives of stakeholders, age limits on pediatric service, complexity of health conditions, a lack of experienced healthcare professionals in the adult arena, and health care financing for chronic and complex conditions. The purposes of this study were to develop a definition of successful transition and to identify determinants that were associated with a successful transition. The 2007 Survey of Adult Transition and Health dataset was used to select variables to be considered for defining success and for identifying predictors of success. The results showed that a small percentage of young adults who participated in the 2007 survey had experienced a successful transition from their pediatric care.
Maternal and Child Health Journal 11/2012; · 2.24 Impact Factor
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ABSTRACT: Early detection of hearing loss in all newborns and timely intervention are critical to children's cognitive, verbal, behavioral, and social development. The initiation of appropriate early intervention services before 6 months of age can prevent or reduce negative developmental consequences. The purpose of this study was to assess, using large, population-based registries, the effect of co-occurring birth defects (CBDs) on the timing and overall rate of hearing screening and diagnosis.
The authors linked statewide data from newborn hearing screenings, a birth defects registry, and birth certificates to assess the timeliness of newborn hearing screening and diagnosis of hearing loss (HL) for infants with and without CBDs in 485 children with confirmed HL.
Nearly one third (31.5%) of children with HL had 1 or more CBDs. The presence of CBDs prolonged the time of the initial infant hearing screening, which contributed to further delays in the subsequent diagnosis of HL.
Better coordination of HL assessment into treatment plans for children with CBDs may enable earlier diagnosis of HL and provide opportunities for intervention that will affect long-term developmental outcomes for these children.
American Journal of Audiology 09/2011; 20(2):132-9. · 0.87 Impact Factor
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ABSTRACT: Studies show that daughters of mothers with breast cancer may be at increased risk for developing the disease. However, daughters' adherence to health behavior and screening recommendations, compared to the general population, is unknown.
Telephone interviews explored characteristics of adult daughters (n=147), including primary and secondary preventive behaviors, body mass index (BMI, kg/m(2)), physical activity, fruit/vegetable intake, alcohol intake, smoking, and mammography. Daughters of mothers with breast cancer were recruited from the community and were compared with Virginia women (n=2528) from the 2005 Behavioral Risk Factor Surveillance System (BRFSS) survey. Differences were examined using logistic regression, adjusting for demographic covariates.
Daughters were younger (p<0.001), more highly educated (p<0.001), and more likely to never have been married (p<0.001) than BRFSS participants, but groups were similar by race. In adjusted analyses, daughters were significantly more likely to have ever had a mammogram (p<0.001) and to have had one recently (p=0.001). Daughters also were significantly less likely to consume>3 fruit/vegetable servings daily (p=0.032) compared to BRFSS results. There were no differences in BMI, smoking rates, alcohol consumption, or level of physical activity at work.
Daughters with familial breast cancer risk were more likely to receive mammography screening than BRFSS participants, but they were no different in BMI, physical activity at work, exercise, or smoking than BRFSS participants and were less likely to consume more fruits and vegetables. More research is needed to explore group differences in screening practices compared to modifiable health behaviors in daughters of mothers with breast cancer.
Journal of Women s Health 06/2011; 20(8):1201-6. · 1.57 Impact Factor
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Journal of palliative medicine 05/2011; 14(5):656-7. · 1.84 Impact Factor
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ABSTRACT: The availability of genetic tests for cancer susceptibility is increasing. Current tests, however, have limited clinical sensitivity. Even when clinically valid tests are available, the genetic counseling and informed consent process might not be feasible for dying patients with cancer. DNA banking preserves the opportunity for future research or clinical testing and may provide critical opportunities for surviving relatives. This study explored the current practices and potential for DNA banking for cancer susceptibility among oncologists specializing in palliative care.
Palliative care oncologists actively providing clinical care for dying patients with cancer were recruited for an online survey. Descriptive statistics for DNA banking practices, perceived qualification to recommend banking, and potential predictors were assessed.
Data were collected from 49 physicians (37% recruitment rate). Eighty percent reported assessing at least some patients for genetic cancer susceptibility in the past 12 months. No participants reported banking DNA for patients in the past 12 months. Only 5% reported feeling at least somewhat qualified to order DNA banking. A Web-based risk assessment tool and genetic counselor on staff were perceived as the most helpful potential resources.
Despite its potential, DNA banking is not being used by palliative care oncologists.
Journal of Oncology Practice 05/2011; 7(3):183-7.
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ABSTRACT: There is a growing recognition in maternal and child health of the importance of social, behavioral, biological, and genetic factors across the entire life course. Unfortunately, most state maternal and child health surveillance systems are not designed to readily address longitudinal research questions or track and follow children across multiple programs over time. The Virginia Department of Health (VDH) recently integrated its birth defects registry, newborn hearing screening tracking and management system, and electronic birth certificate (EBC) into a robust, Web-based surveillance system called the Virginia Vital Events and Screening Tracking System (VVESTS). Completely redesigning the existing birth defects and newborn hearing screening system (the Virginia Infant Screening and Infant Tracking System--VISITS I) with minimal disruption of ongoing reporting presented a number of challenges. Because VVESTS had different requirements such as required fields and data validations, extensive data preparation was required to ensure that existing VISITS I data would be included in the new system (VISITS II). Efforts included record deduplication, conversion of free text fields into discrete variables, dealing with missing/invalid data, and linkage with birth certificate data. VISITS II serves multiple program needs; improves data quality and security; automates linkages within families, across programs, and over time; and improves the ability of VDH to provide children with birth defects and their families necessary follow-up services and enhanced care coordination.
J Registry Manag 01/2011; 38(1):15-23.
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ABSTRACT: This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to be present if the race/ethnicity variable was a significant predictor in the final model. Examining the components of disparate outcomes, African American children were found to be less likely than their white counterparts to have a usual source for sick and preventive care and to have a personal doctor or nurse. Their parents were less likely to say that doctors spent enough time, listened carefully, were sensitive to values and customs, and made them feel like a partner. These findings emphasize the need to examine health care disparities at a state level in order to guide efforts at remediation.
ISRN pediatrics. 01/2011; 2011:273938.
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ABSTRACT: This study explored relationships between worry, perceived risk for breast cancer, consulting a genetic counselor, having genetic testing, and genetic risk for women whose mothers had breast cancer. Analyses involved data from a community-based phone survey of women whose mothers had breast cancer. Participants were categorized as having low, intermediate, or high genetic risk based on their reported family history, in accordance with an accepted classification scheme. The Lerman Breast Cancer Worry Scale measured worry, and participants reported their perceived lifetime likelihood of breast cancer, risk compared to others, and chance from 1 to 100. ANOVA, chi-square, and multiple regression analyses were conducted as appropriate. One hundred-fifty women participated. Mean age was 38 years, and 81% were Caucasian. Fifty-two women had low, 74 had intermediate, and 24 had high genetic risk for breast cancer. There were no significant differences in worry or perceived risk by hereditary risk category. Most high-risk women (91%) had not spoken with a genetic counselor, and no one had previous genetic testing. These findings suggest perceived risk, worry about breast cancer, and use of expert consultation do not match the genetic contribution to risk. There is a need for effectively stratifying and communicating risk in the community and providing tailored reassurance or referral for high-risk assessment.
Journal of Genetic Counseling 12/2010; 20(2):157-64. · 1.77 Impact Factor
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ABSTRACT: Hereditary cancer assessment at the end of life is a relatively unexplored area, but it could be critical for surviving family members. This study explored the prevalence of hereditary cancer among dying cancer patients and assessed patients' perceived awareness of DNA testing and/or banking in a public access hospital. Palliative care patients with cancer from a single institution (or their medical-decision-making surrogates for patients unable to answer for themselves) completed structured interviews. Information was collected through medical records review and structured interviews for 43 dying cancer patients. Information for 9 patients was collected from surrogates. Nine patients (21%, 95% CI = 8.8% to 33.1%) had strong genetic risk. Currently available genetic tests could have addressed this risk for several patients. None had previous genetic counseling, testing or DNA banking. Among strong-risk patients, about half of patients/surrogates had heard/read "almost nothing" about genetic testing (44%) and DNA banking (67%). Perceived genetic awareness was not associated with genetic risk, and neither were sociodemographic characteristics. The proportion of hereditary cancer may be at least as high in the palliative care population as in other clinical settings, but awareness and uptake among patients are low. These conditions are not being recognized upstream and families are losing valuable information.
Journal of Genetic Counseling 10/2010; 19(5):497-525. · 1.77 Impact Factor
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ABSTRACT: Despite significant advances in perinatal and neonatal medicine, infant mortality (IM) remains a significant public health problem. The causes of IM are complex, numerous, and a result of interacting genetic and environmental factors. This paper explores genetic contributions to IM using data from Virginia. Leading causes of IM in Virginia are disorders of prematurity/low birth weight, congenital anomalies, and sudden infant death syndrome (SIDS). Recognized single gene disorders as well as genetic polymorphisms are discussed in relation to their role in IM. While preconceptional prevention from a genetic standpoint may not currently be possible, this paper provides clinicians with information on identifying women at highest risk for IM and those in need of additional surveillance and intervention. Suggestions for simple health messages to provide to women of child-bearing age to decrease the risks for birth defects and obstetrical/perinatal complications resulting in IM are also discussed.
Southern medical journal 04/2010; 103(5):440-4; quiz 445-6. · 0.92 Impact Factor
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ABSTRACT: This study explored risk perceptions after breast cancer risk appraisal. The study involved a randomized trial of Women's Health clinic patients (>or= 40 years old). Primary outcome was perceived breast cancer risk at baseline, 1 month, 6 months, and 18 months. Perceived breast cancer risks were higher than actual calculated risks at baseline. At baseline, 45% reported moderate/strong risk and 43% reported lower-than-average risk; 53% said that their risk was lower than 15%. Mean perceived lifetime risk was 31 out of 100. Throughout follow-up, the treatment group reported lower risks by all measures, as compared to controls. However, for African American women, perceived risk "out of 100 women" did not change. A brief health risk appraisal tends to lower breast cancer risk perceptions for at least 18 months, but the impact may vary by race/ethnicity. These findings could affect health behaviors, such as annual mammograms, which are influenced by perceived risk.
Health Education & Behavior 12/2008; 35(6):855-65. · 1.54 Impact Factor
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ABSTRACT: Approximately 5%-10% of all cancers and cardiovascular diseases have a significant genetic component. Of the 15 most frequent admission diagnoses for palliative care, at least one third have a significant genetic component which is testable, informative, and potentially life saving to the survivors. Once the patient has died, the chance to test or bank DNA for common inherited conditions such as breast cancer, colon cancer, cardiovascular disease, etc., is gone.
To determine the frequency of genetic conditions for commonly seen palliative care conditions, the availability of testing or DNA banking for future testing, and how genetics assessment is helpful.
A case illustration and review of the currently published evidence.
Genetic testing fits the accepted model of family-centered palliative care, is ethical, and may lead to life-saving interventions. Risk assessment tools and helpful websites are available.
While common genetic conditions should be recognized before end-of-life care, the palliative care health professional may be the only person to recognize the condition before death of the patient and loss of available DNA.
Journal of Palliative Medicine 05/2008; 11(3):451-8. · 1.85 Impact Factor
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ABSTRACT: Gender differences in reported family cancer history could reduce the effectiveness of genetic screening for cancer risk.
We randomized 6 schools to teach ninth graders about health genealogy through workshops or offered a delayed intervention. We assessed the effect of the intervention on reported family history of various cancers along with gender and side of the family from which cancer was reported.
Girls reported more breast cancer in the family. Both sexes reported more maternal relatives with breast cancer. There were no treatment group effects.
There are gender differences in reported family history of breast cancer.
Journal of Cancer Education 02/2008; 23(3):180-5. · 0.76 Impact Factor
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ABSTRACT: Low participation among underserved populations in health research constrains progress in public health practices. From 2003 to 2005, Women's Health Clinic patients at the VCU Health System were recruited to a trial investigating breast cancer risk communication. In secondary analyses, we examined dimensions of the recruitment of these diverse women. The sample characteristics (age, insurance, race and previous mammograms) were compared to the overall clinic. Of recruitment attempts for eligible women, 45% consented; of those who declined, the top cited reasons were lack of time (40%) and lack of interest (18%). Of 899 participants, 35% qualified for the indigent care program, compared to 31% of the overall clinic (P<0.001). Forty-five percent of participants were African American, compared to 54% of overall clinic patients (P<0.001). Participants were younger (50 vs. 53 years, P<0.001) than the overall clinic population. Nonrepresentative enrollment of patients in clinical trials is common and could lead to suboptimal applicability of findings. Although there were statistically significant race and age differences between the study sample and the overall population, we demonstrate that waiting room recruitment can engage diverse women in a clinical trial and cancer risk communication.
Journal of the National Medical Association 08/2007; 99(8):917-22. · 1.16 Impact Factor
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ABSTRACT: The objective was to examine the relationship between underinsurance and other core outcomes for children with special health care needs.
This study analyzed data from the National Survey of Children With Special Health Care Needs. Two alternative definitions of underinsurance, designated attitudinal and economic, were investigated. Logistic regression models in which the response variables were the child's status for each of the target core outcomes and underinsurance status was a dichotomous predictor variable were created. In addition to underinsurance status, 10 other predictor variables were included in the model.
Underinsurance is associated with the Maternal and Child Health Bureau core outcomes for children with special health care needs related to satisfaction with care and partnering with families in decision-making, access to a medical home, community-based service delivery that is easy to use, and access to services to make transitions to adulthood. In each case, children with special health care needs who were underinsured had significantly poorer outcomes than did children who were adequately insured.
Although these results cannot clarify the cause of poorer outcomes, there are clear negative effects associated with the problem of underinsurance. Inadequate health care coverage for children with special health care needs may save dollars in the short-term but, if other outcomes are compromised, then children, their families, and society at large may pay a price in the longer term.
PEDIATRICS 03/2007; 119(2):e341-7. · 4.47 Impact Factor
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ABSTRACT: Differences in spiritual beliefs and practices could influence perceptions of the role of genetic risk factors on personal cancer risk. We explored spiritual coping and breast cancer risk perceptions among women with and without a reported family history of breast cancer. Analyses were conducted on data from 899 women in primary care clinics who did not have breast cancer. Structural equation modeling (SEM), linear, and logistic modeling tested an interaction of family history of breast cancer on the relationship between spiritual coping and risk perceptions. Overall analyses demonstrated an inverse relationship between spiritual coping and breast cancer risk perceptions and a modifying effect of family history. More frequent spiritual coping was associated with lower risk perceptions for women with positive family histories, but not for those with negative family histories. Results support further research in this area that could influence communication of risk information to cancer genetic counseling patients.
Journal of Genetic Counseling 01/2007; 15(6):449-60. · 1.77 Impact Factor
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ABSTRACT: The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct.
Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance. Items were divided into groups corresponding to three definitions of insurance (Attitudinal, Structural, and Economic). Algorithms were established, and underinsurance rates calculated for each definition. Logistic regression models were constructed to investigate demographic characteristics related to underinsurance.
Different percentages of Virginia CSHCN were found to be underinsured based on the definitions of Attitudinal (28.9%), Economic (25.6%), and Structural (2.9%). Eight demographic characteristics and the pervasiveness of the child's special health care needs were examined in relation to underinsurance. For the Attitudinal definition, poverty level and pervasiveness were significant predictors in the model. In the model predicting Economic underinsurance status, pervasiveness and three of the demographic characteristics significantly predicted underinsurance status. In the multivariate logistic regression model for the Structural definition, none of the predictors was significantly related to underinsurance.
These findings demonstrate that alternative definitions of underinsurance yield dramatically different underinsurance rates. Further, even when yielding similar rates, alternative definitions may identify substantially different sets of children. The likelihood of being underinsured has a strong association with low-income status and pervasiveness of the child's special health care needs. Understanding these factors and their implications will be important when planning accessible and comprehensive health plans and care systems for CSHCN.
Maternal and Child Health Journal 07/2005; 9(2 Suppl):S67-74. · 2.24 Impact Factor
