Barriers and facilitators in the transition from pediatric to adult care in people with cystic fibrosis in Europe - a qualitative systematized review.

Abstract

Objectives: With over 54,000 people affected, cystic fibrosis is one of the most common rare diseases in Europe. As life expectancy of this disease has steadily increased in recent years, the transition from pediatric to adult care has become a principal issue. This study aimed to identify facilitating and hindering factors in the transitional care of cystic fibrosis patients in order to derive indications for improving care.

Methods: A qualitative systematized review was conducted in May 2024 with a systematic search carried out in MEDLINE, CINAHL and Livivo, including European studies from 2009 to 2024. The studies' quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative studies. Thematic analysis was applied for analyzing the data to identify categories.

Results: Nine studies met the inclusion criteria. Their quality can be rated as medium to high. Parental support, commitment and social support were identified as beneficial factors. Preparation for the transition, appropriate communication and continuous follow-ups at the adult center also contributed to a continuous transition. However, the parents' changing roles, fears and the usual treatment in pediatrics were obstacles. The adjustment to the adult center and structural problems presented further barriers to transition.

Conclusions: Various factors were identified to influence the transition process in cystic fibrosis, with consistency across the studies. In practice, comprehensive care is required, focused on the patients' needs, with more information provided and enhanced collaboration among stakeholders. Further research regarding the long-term effects of transition and the utilization of structured transition programs is needed.