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.

This study examined whether multidisciplinary health care providers (HCPs) perceived race of persons with sickle cell disease (SCD) as an influence in the delivery of health care. A total of 227 multidisciplinary HCPs completed the three-item Influence of Patient Race on Provision of Health Care Services Index (Cronbach's alpha = = 0.77). Results suggest that African American HCPs were more likely to perceive race as an influence along all scale items, whereas Caucasian and other race HCPs did not. Female HCPs and those who serve adults were more likely than male HCPs and those who serve children to perceive race as having an influence on the quality of health care. Findings suggest a need for the examination of the health care delivery systems in which persons with SCD receive care to determine if race does, in fact, affect the delivery of health care and to explain the discrepancies in the perceptions of the HCPs.

Despite emphasis on including patient and parent education in sickle cell comprehensive clinical care, literature on the use of such materials is scarce. To discover the availability of, satisfaction with, use of and interest in patient and parent education materials for sickle cell disease, we surveyed, with a 176-item self-administered questionnaire, 209 sickle cell professionals nationwide. Respondents came from 74 sickle cell programs, were 63.4% female and 37.7% African American, and represented many health professions. We found that materials about patient behavior and psycho-social issues, as opposed to those about the disease and treatment, were more often unavailable and, when available, more often unsatisfactory and less frequently used. When available, use of materials was unrelated to satisfaction and perceptions of patient problems for most topics. For each of 10 topics, over 90% of the respondents were interested in materials covering the topic. Future research should examine the low to moderate use of psycho-social and behavioral materials with sickle cell patients, and should assess the appropriateness and effectiveness of existing and new materials.