Adult Care Experiences and Barriers to Transition in Adult Patients with Sickle Cell Anemia

With improvements in care in the pediatric age group, most patients with sickle cell disease (SCD) live to adulthood. Though life expectancy is increasing, there is evidence that patients experience increasing mortality at the time of transition from pediatric to adult care. As care of adult patients is beyond the scope of pediatrics, transition to adult providers becomes a necessary part of comprehensive care for youths with SCD. When present, transition programs often focus on development of self management skills, improving health literacy, and other life skills beyond simply identifying and transferring to an adult provider. Most studies of pediatric patients with SCD and other chronic illnesses have focused on the concerns of patients prior to transition, but few have examined the experience of patients who have entered adult care. Using semi-structured interviews, our study examined adult SCD patients' transition experiences and difficulties faced in adult care that may contribute to the increased mortality during this time.

Participants seen at the UAB Sickle Cell Clinic were recruited to participate in a semi-structured interview. To elicit the broadest experiences of adult care, we did not restrict the interviews to young adults, but recruited any interested participant with SCD >18 years old. The interview consisted of open ended questions with additional prompts regarding specific barriers found in the literature. One author (CB) performed all interviews, either in the UAB Sickle Cell Clinic or by telephone. Interviews continued until data saturation was achieved. All interviews were audio recorded and transcribed, then analyzed in three stages. First, transcripts were reviewed and coded independently by two authors (CB and JL). Second, the authors met to reconcile code definitions and agree on an overall coding scheme, which was based both on a priori themes from previous studies as well as inductive codes noted during analysis. Finally, the authors re-coded the transcripts based on the agreed upon coding scheme and reconciled differences.

Interviews were completed with 10 participants aged 24–55 years old. All patients had medical insurance, with 9 on disability. Transition topics discussed included timing of and preparation for transfer, development of independence, feelings about and experiences in pediatric and adult care. We confirmed that adults with SCD experienced many of the concerns noted in previous studies of pre-transition adolescents. Participants experienced distrust from adult physicians, mostly regarding pain. Though all participants feel that as adults, they successfully transitioned to independence in care for their disease, a number of them continue to regularly consult their parents regarding their care and/or live with their parents. Participants confirmed that a number of physicians they encountered were not familiar with sickle cell care and were concerned that the care they received from non-hematologists was inappropriate. None of the participants received formal preparation for transfer, though half were referred directly to an adult hematologist from pediatric care. Participants noted poor coordination of care between primary care physicians and hematologists, and difficulty identifying physicians willing to care for them. Those who had spent time in the work force noted difficulty maintaining employment.

We found that concerns expressed by adolescents prior to transition in previous studies were well-founded and experienced in adulthood by a number of participants. Many patients feel poorly treated and have found few adult providers familiar with SCD. Since this study included patients engaged in a specialized sickle cell clinic, selection bias is a limitation. Though skills taught in many transition programs may help to overcome these barriers, systemic changes must also take place to address these external issues reported by patients who have transitioned to adult care.

No relevant conflicts of interest to declare.