Joseph Telfair

Transfer as a Component of the Transition of Adolescents with Sickle Cell Disease to Adult Care: Adolescent, Adult, and Parent Perspectives

PURPOSE There are no empirical studies which access the transfer needs/concerns of adolescents and young adults with sickle cell disease (SCD) and their primary caretakers. The overall purpose of this research was to determine the issues, concerns, and expectations of adolescents, young adults and primary caretakers with regard to transfer to adult care. METHODS Participants were recruited from clinics and programs participating in the Duke/UNC Comprehensive Sickle Cell Program. Using a cross-sectional survey design, young adults (n = 60), adolescents (n = 36) and primary caretakers (n = 25) were administered the Sickle Cell Transfer Questionnaire (SCTQ). RESULTS Adolescents and young adults with SCD were primarily concerned about how they would pay for medical care and how they would be treated by adult providers. Caretakers were concerned about their teens leaving pediatric care and assuming responsibility for medical care. All three groups reported mixed emotions about leaving pediatric care. There was consensus among the respondents regarding the need for transfer programs and what they should offer. Bivariate analysis revealed that age, education level, and disease severity were statistically significant co-factors influencing the feelings, concerns and opinions of the study participants. CONCLUSION Future longitudinal experimental research is needed to corroborate the results of this study and to assess the effectiveness of transition-related intervention programs for adolescents with SCD and their families.

Providers' perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease.

Until recently, few children with chronic illnesses such as sickle cell disease (SCD) lived past late adolescence. Substantial reductions in mortality mean a growing number of adolescents with SCD reach adulthood. Consensus among researchers and health care providers (HCP) from multiple disciplines is that critical attention to and more empirical research on the transition from pediatric to adult care is needed. We address the following questions: (1) How do pediatric and adult providers demonstrate involvement in transition? (2) What is expected of adolescents when they move to adult care? and (3) Do providers think there is a need for a systematic transition program? A cross-sectional, multi-format survey research study utilizing open-ended and forced-choice questions was conducted to compare responses between pediatric and adult providers from multiple disciplines. Data were collected from 227 HCP in three waves. Significant bivariate results (p < 0.05) reflected differing opinions regarding transition expectations and program need, especially among female providers, those practicing in urban areas, and providers who treat both adolescent and adult clients in comparison with their counterparts. Discussion includes implications for program development, social service and public health practice, and future research.

Transition and Sickle Cell Disease

Sickle cell disease (SCD), the most common genetic disease screened for in the newborn period, occurs in ∼1 in 2400 newborns in the general population and 1 in 400 individuals of African descent in the United States. Despite the relative high prevalence and low pediatric mortality rate of SCD when compared with other genetic diseases or chronic diseases in pediatrics, few evidence-based guidelines have been developed to facilitate the transition from pediatrics to an internal medicine or family practice environment. As with any pediatric transition program, common educational, social, and health systems themes exist to prepare for the next phase of health care; however, unique features characterizing the experience of adolescents with SCD must also be addressed. These challenges include, but are not limited to, a higher proportion of SCD adolescents receiving public health insurance when compared with any other pediatric genetic or chronic diseases; the high proportion of overt strokes or silent cerebral infarcts (∼30%) affecting cognition; risk of low high school graduation; and a high rate of comorbid disease, including asthma. Young adults with SCD are living longer; consequently, the importance of transitioning from a pediatric primary care provider to adult primary care physician has become a critical step in the health care management plan. We identify how the primary care physicians in tandem with the pediatric specialist can enhance transition interventions for children and adolescents with SCD.

Self-efficacy as a predictor of adult adjustment to sickle cell disease: one-year outcomes.

Objective The present study prospectively investigated the role of self-efficacy in predicting disease symptomatology and health services utilization for adult patients with sickle cell disease. Methods These data are derived from a 12-month prospective cohort study of African American adults with sickle cell disease. Disease-specific perceptions of coping self-efficacy and indices of disease severity, health care utilization, and psychosocial adjustment were assessed by use of standardized questionnaires administered by trained clinicians. Results Perceptions of self-efficacy for coping with sickle cell disease were moderately stable across the 12-month study period. At baseline (N = 147), significant inverse relationships, measured with Pearson correlations, were noted between self-efficacy and the following variables: physical symptoms, psychological symptoms, pain severity, and number of physician visits over the preceding 12 months (p < .01). Similar relationships with self-efficacy were noted at the 1-year follow-up (N = 104) period for measures of physical symptoms, psychological symptoms, and pain severity (p < .01). In multiple-regression models, baseline self-efficacy scores predicted changes over the 1-year study period in physical and psychological sickle cell disease symptomatology. Moreover, changes in self-efficacy from baseline to 1-year follow-up were significantly and independently related to changes in physical symptoms, psychological symptoms, and pain ratings from baseline to 1-year follow-up. Conclusions Self-efficacy beliefs among African American adults with sickle cell disease are inversely related to reported disease symptomatology, and these relationships persist across time. Future investigations should examine the mechanisms through which relationships between self-efficacy and adjustment to sickle cell disease are effected, as well as the feasibility and effectiveness of enhancing self-efficacy beliefs as a means of improving adjustment to sickle cell disease.

Rural/Urban Differences in Access to and Utilization of Services Among People in Alabama with Sickle Cell Disease

Objective. This study examined relationships between socioeconomic factors and the geographic distribution of 662 cases of sickle cell disease in Alabama in 1999–2001. Methods. Measures of community distress, physical functioning, and medical problems were used in analyzing utilization differences between individuals with sickle cell disease living in urban and rural areas. Results. Utilization of comprehensive sickle cells disease services was lower for individuals with sickle cell disease living in rural areas than for those living in urban areas. Rural clients reported significantly more limitations than urban clients on several measures of physical functioning. The results also suggest that utilization of services was higher for those with more medical problems and those who lived in high distress areas, although these findings did not meet the criterion for statistical significance. Conclusions. Conclusions based on statistical evidence that geographic location and socioeconomic factors relate to significantly different health care service experience bear important implications for medical and health care support systems, especially on the community level.

Transition from pediatric to adult care in sickle cell disease: Establishing evidence-based practice and directions for research

Transition of young adults with sickle cell disease (SCD) from pediatric to adult medical care is an important priority, given medical advances that have transformed SCD into a lifelong chronic condition, rather than a disease of childhood. Successful transfer from pediatric to adult care has its foundation in collaboration among the young adult, the family, and the health care system to support building skills in positive disease management and independent living. Systemic issues in transition from pediatric to adult care for individuals with SCD include limited access to adult providers with the skills and/or interest in caring for people with SCD; poor communication and follow-up between pediatric and adult providers; and insurance coverage and reimbursement for care coordination. Family and patient issues in transition include lack of skill development for successful transition into adulthood; absence of financial independence; fear of the unknown; and increasing morbidity with age. The design and evaluation of successful transition programming in SCD requires clarity in conceptual frameworks and consistent measurement, both before and after transfer to adult care. Strategies used by three SCD transition programs and future directions for research and program development are presented.

Demonstrating excellence in practice-based research for public health

This document explores the opportunity for scholarship to enhance the evidence base for academic public health practice and practice-based research. Demonstrating Excellence in Practice-Based Research for Public Health defines practice-based research; describes its various approaches, models, and methods; explores ways to overcome its challenges; and recommends actions for its stakeholders in both academic and practice communities. It is hoped that this document will lead to new partnership opportunities between public health researchers and public health practitioners to strengthen the infrastructure of public health and add new dimensions to the science of public health practice. Demonstrating Excellence in Practice-Based Research for Public Health is intended for those who produce, participate in, and use practice-based research. This includes academic researchers and educators, public health administrators and field staff, clinical health professionals, community-based organizations and professionals, and interested members of the public.

Multi-site study of transition in adolescents with sickle cell disease in the United Kingdom and the United States.

Adolescents with sickle cell disease may have problems of adjustment during the phase of transition from pediatric to adult health care. It is important to identify factors that may help in the development of appropriate interventions. We were interested in possible similarities, in terms of adjustment to transition in two countries where health service provision is quite different. The study employed a cross-sectional survey design, with a sample of adolescents (still in pediatric care) drawn from a U.S.A national sample and a single U.K. site. A battery of validated disease-specific measures was used to assess adolescent perceptions of physical and psychological symptoms, self-efficacy, self-management skills, and gather demographic data. There were no significant demographic differences between the samples of adolescents in the two countries. Taken together, the two populations indicate that adolescent age and educational level were associated with symptoms (physical and psychological). Self-efficacy is not associated with demographic factors, but is predicted by physical symptoms, while different aspects of self-management are predicted by age (responsibility with care), educational level (independence and confidence with care) and psychological symptoms (knowledge about SCD and confidence with care). This study highlights the importance of gathering disease-specific transitional information from adolescents with sickle cell disease in the U.K. and U.S.A. It also shows that demographic variables have to be considered in the development of any intervention programme.

The Association of Child Condition Severity with Family Functioning and Relationship with Health Care Providers Among Children and Youth with Special Health Care Needs in Alabama

Objective: The purpose of the present study is to assess how the severity of a child’s condition affects family functioning and the relationship with health care providers among children with special health care needs in Alabama. Methods: Using the data from the National Survey of Children with Special Health Care Needs (CSHCN), three variables were used as measures of condition severity: responses to the CSHCN screener questions, whether condition affected the ability to do things for children and youth with special health care needs (CYSHCN), and the level of severity of CYSHCN’s condition. The dependent variables included family functioning and provider relationship. Results: CYSHCN who only take prescription medicine for their chronic condition (MO) had lower condition severity from those who have other needs (NMO). In NMO CYSHCN, higher condition severity was associated with increased strain on family functioning outcomes and higher unmet needs in provider relationship outcomes, adjusted for demographic and insurance variables. Families of NMO CYSHCN with a more severe condition spent more temporal and financial resources and had a higher need for professional care coordination, and were less likely to have sensitive providers. Conclusions: Severity of condition is an important factor increasing strain on family resources and relationship with the provider. Our results indicate the need for professional care coordination and family support, particularly among those families in which there is a NMO CYSHCN with a more severe condition. This finding supports the mandate that all CYSHCN should have their health care coordinated and provided in the context of a medical home.

Evaluation of a Disease-Specific Self-Efficacy Instrument in Adolescents with Sickle Cell Disease and its Relationship to Adjustment

The psychometric properties of a disease-specific instrument used to assess self-efficacy in adolescents with sickle cell disease, the Sickle Cell Self-Efficacy Scale, were evaluated in a sample of 131 adolescents ranging from 11 to 19 years of age. This nine-item instrument was associated with a one-item, general self-efficacy question and an item of self-control. After controlling for age, gender, highest grade of education completed, and the number of individuals in the household, high levels of self-efficacy were related to fewer physical, psychological, and total symptoms. Using the stress process framework to examine the relationship between self-efficacy and self-reported symptoms in adolescents may lead to the initiation of effective intervention programs capable of increasing levels of self-efficacy in adolescents. These interventions could lead to better outcomes for adolescents with sickle cell disease. Additional longitudinal investigations are needed to evaluate the ability of self-efficacy to predict adolescent adjustment over time.