Transfer as a component of the transition of adolescents with sickle cell disease to adult care: Adolescent, adult, and parent perspectives

Abstract

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.

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

“…Medical advances over the past few decades have lead to improved life expectancy for people with SCD (Platt et al, 1991). Nonetheless, as children grow into adulthood they are faced with new challenges of social and institutional barriers, such as access to health care, social services, and employment (Telfair, 1994;Telfair, Myers, & Drezner, 1994). Many young people with SCD have to deal with health professionals' and the public's lack of knowledge and understanding of their condition, the stereotype of being socially dysfunctional, and the stigmatization of their condition (Telfair & Nash, 1996).…”

“…The increasing number of adolescents with SCD surviving into adulthood and ready for transfer from pediatric to adult care has made transition a critical issue (Telfair, Myers, & Drezner, 1994). Given the chronicity of SCD, this transition encompasses both medical and life transition and is defined as the process involved in the movement of adolescents from a focus on pediatric life skill issues to adult life skill issues, including transfer from pediatric or child-centered care to adult health care services (Telfair, Myers, & Drezner, 1994).…”

“…Given the chronicity of SCD, this transition encompasses both medical and life transition and is defined as the process involved in the movement of adolescents from a focus on pediatric life skill issues to adult life skill issues, including transfer from pediatric or child-centered care to adult health care services (Telfair, Myers, & Drezner, 1994). Transition from pediatric to adult health care is identified as "the most difficult and potentially traumatic passage faced by adolescents with SCD" (Kinney & Ware, 1996;Hauser & Dorn, 1999) and many adolescents and young adults with chronic conditions, such as diabetes (Crosnier & Tubiana-Rufi, 1998), cystic fibrosis (Landau, 1995), spina Downloaded by [Cornell University Library] at 10:55 16 November 2014 bifida (Sawyer et al 1998), congenital heart disease (Dore, de Guise, Mercier, 2002), and chronic arthritis (Ansell & Chamberlain, 1998), lack the self-advocacy, independent living and vocational skills, and sense of self-efficacy that would allow them to smoothly transition into adult care (Wagner, 1992).…”

A Clinical Tool to Measure the Components of Health-Care Transition from Pediatric Care to Adult Care: TheUNC TRxANSITION Scale

“…When the available health-care transition measures are surveyed, nearly all of them are disease-specific [12][13][14][15][16][17] and, consequently, not easily adapted to other disorders or disease conditions. Moreover, all of the existing healthcare transition instruments rely solely on self-report.…”

Transition to Adult Care: A Statewide Survey among Pediatric Hemoglobinopathy Specialty Centers in New York

“…The primary concern of young adults regarded their ability to pay and acceptance by adult care providers [18]. Studies have identified a lack of information on transition, fear of departing from their familiar healthcare provider [13] and embarking on a relationship with a new provider [17] as major concerns on transition to adult care.…”