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.

BackgroundMost new HIV infections in Africa are acquired from cohabiting heterosexual partners. Couples' Voluntary Counselling and Testing (CVCT) is an effective prevention strategy for this group. We present our experience with a community-based program for the promotion of CVCT in Kigali, Rwanda and Lusaka, Zambia.MethodsInfluence Network Agents (INAs) from the health, religious, non-governmental, and private sectors were trained to invite couples for CVCT. Predictors of successful promotion were identified using a multi-level hierarchical analysis.ResultsIn 4 months, 9,900 invitations were distributed by 61 INAs, with 1,411 (14.3%) couples requesting CVCT. INAs in Rwanda distributed fewer invitations (2,680 vs. 7,220) and had higher response rates (26.9% vs. 9.6%), than INAs in Zambia. Context of the invitation event, including a discreet location such as the INA's home (OR 3.3–3.4), delivery of the invitation to both partners in the couple (OR 1.6–1.7) or to someone known to the INA (OR 1.7–1.8), and use of public endorsement (OR 1.7–1.8) were stronger predictors of success than INA or couple-level characteristics.ConclusionPredictors of successful CVCT promotion included strategies that can be easily implemented in Africa. As new resources become available for Africans with HIV, CVCT should be broadly implemented as a point of entry for prevention, care and support.

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.

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.

Abstract:Purpose: There are no empirical studies which assess 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.

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.

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The objective was to present the 'voice' of adolescents with sickle cell disease (SCD) as part of the discussion of transition issues by identifying and documenting their expressed concerns and expectations, as well as what program priorities they perceive would facilitate a smooth transition to adult care. Cross-sectional data were collected by means of structured questionnaire interviews, using standard instruments. A volunteer sample of 172 adolescents with SCD aged 14 years and older still in pediatric care within community-based and medical center SCD programs across the United States was recruited. Statistically significant results indicated the top concerns of adolescents were: lack of information relating to their transition to adult care; fear of leaving the healthcare provider with whom they were already familiar; fear that adult care providers might not understand their needs; belief that an SCD transition program was needed and that it should focus on provider support; information provision about adult care programs; ways to meet adult care providers; and ways to help healthcare providers understand their needs. We conclude that many adolescents with SCD have concerns and fears about their transition to adult care. Based on findings from this study, it is recommended that transition programs address structural and interpersonal issues of adolescents and providers if they are to be successful. Strategies by which this can be achieved are recommended, including the need to encourage, support and provide assistance for peer education, outreach programs and peer-led instructions, since these hold great promise as approaches that are adolescentcentered and adolescent-delivered.