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theses

In the United States, sickle cell disease (SCD) affects an estimated 100,000 people. Although advances in treatment have resulted in up to 98% of patients surviving to 18 years, the majority of deaths in this patient population occur after age 18 and after the transfer from a pediatric to an adult provider. Further, the highest rate of acute care encounters and re-hospitalizations for patients with SCD occurs among 18–30 year olds. Patients with SCD require comprehensive care that necessitates patient compliance with primary care appointments, specialty clinical visits, medications, transfusions, and regular health maintenance. As patients transition from pediatric care, they are at risk for lapses in care that can result in serious complications.

Barriers to successful transition from pediatric to adult care include a lack of support, minimal transition planning, providers’ lack of time to address transition issues, and disparities in care related to the racial background of the patients. The absence of well-defined programs for the transition from pediatric to adult care results in young adult patients feeling generally unprepared for transition to the adult healthcare system and leads to reduced utilization of necessary preventive treatment and health maintenance. Unfortunately, there are few published transition programs in the literature to date, with a noticeable gap in using peer support to improve outcomes.

To address this gap, a novel medical student mentor transition intervention was developed following a formative qualitative needs assessment. Guided by patient feedback and the Social-Ecological Model of Young Adult and Adolescent Readiness to Transition, the intervention targeted SCD knowledge, self-management knowledge and skills, healthcare navigation skills, pain management, healthy behaviors, managing expectations for the emergency room, navigating patient-provider relationships, self-advocacy, managing expectations for adult care, and support resources. Feasibility and acceptability of the intervention was assessed through enrollment rates, reasons for refusal, retention rates, engagement with the intervention, satisfaction, and reasons for drop-out. The preliminary efficacy of the intervention among patient participants was assessed for changes in transition readiness, health related quality of life, self-efficacy, SCD knowledge medication adherence, and health literacy. Among medical student mentor participants, changes in attitudes towards chronic illness and SCD knowledge were explored.

The results demonstrated that a medical student mentor intervention for transition was feasible for both patient and mentor participants. Patient participants demonstrated adequate retention (76.4%) and adherence to the intervention (75.0%) and rated the intervention components highly. All medical students who entered the program completed it fully, and rated the program highly. Patient participants demonstrated significant improvements in transition readiness, self-efficacy, and medication adherence. Medical students also demonstrated significant improvements in SCD knowledge.

A medical student mentor intervention for transition from pediatric to adult care for young adults with SCD is both feasible and acceptable to patients and medical students. Preliminary evidence suggests such an intervention may provide dual benefit for both patients and students. This dissertation highlights the need for further research on the efficacy of this transition program, including psychosocial and medical outcomes of care.

ETD_10723

Ph.D.

Includes bibliographical references

doi:10.7282/t3-t584-m453

ETD doctoral

The author owns the copyright to this work.