A new study has found concerns among patient and healthcare provider experiences in the transition from pediatric to adult care in sickle cell disease (SCD).

The study, published in Patient Preference and Adherence, notes that this transition, which occurs during adolescence, involves added risks in terms of medical care adherence.

“The purpose of this study was to provide an insight on the experience of adolescent and adult patients with SCD as well as their pediatric and adult care HCPs in the context of pediatric to adult care transition,” the authors wrote. “And also, to analyze those concerns in order to better understand medical care adherence and to improve patient care.”

The research team conducted semistructured, in-person interviews with 15 adolescent patients, 10 adult patients, 9 pediatric healthcare providers, and 13 adult healthcare providers from a single center in Lyon, France. One researcher conducted all the interviews using the consolidated criteria for reporting qualitative research (COREQ) and Standards for Reporting Qualitative Research (SRQR) checklists.

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Topics explored included SCD, treatments, and the healthcare system. The topic of “pediatric-to-adult care transition” was not foreseen by the authors and emerged as a salient subtopic during the interview process.

The transition was reported as difficult for patients due to the drastic changes between pediatric care for SCD, in which patients have one healthcare provider they have known for years and where they are “pampered” much more than they are in adult care. In adult care, they usually have multiple care providers and do not know who they will see at each visit. Patients reported feeling abandoned and that they were suddenly expected to be autonomous the day they turned 18.

Both patients and healthcare providers suggested the transition could be improved with greater anticipation and more time to gradually introduce patients to a new healthcare team, which would presumably result in better care adherence as well as a better patient experience with their treatment.

Reference

Hoegy D, Guilloux R, Bleyzac N, et al. Pediatric-adult care transition: perceptions of adolescent and young adult patients with sickle cell disease and their healthcare providers. Patient Prefer Adherence. Published online October 1, 2022. doi:10.2147/PPA.S377236