Challenges in Hemophilia Care and Requirements for Pediatric-to-Adult Transition: Single-Center Experience from a Resource-Limited Setting.

Abstract

Introduction: Adolescents and young adults with hemophilia (AYAwH) face several challenges that might affect their physical, psychological, social, and academic/occupational functioning. These factors may lead to non-adherence to treatment.

Aim: The study aimed to identify the obstacles, limitations, and needs related to the pediatric-to-adult transition of care in AYAwH.

Methods: A retrospective, mixed-methods study included 21 AYAwH (20 hemophilia A, 1 hemophilia B) aged 16-30 years. Satisfaction survey data and one-on-one interview responses were analyzed using both quantitative and qualitative approaches.

Results: Their mean (SD) age was 23.8 (4.5) years old. The median (range) dose of factor prophylaxis was 9.35 (4.9-37) IU/kg/dose, 2-3 times/week. The three most common challenges in care were route of administration, lack of self-infusion skills, and pain. The majority of the AYAwH (85.7%) stated that hemophilia had the greatest impact on their quality of life. Additionally, 28.3% stated unwillingness to be transferred to the adult clinic, with the three biggest concerns being long waiting times at the adult clinic, changes in the insurance system, and a lack of a proper transition system. Key factors identified as contributing to a successful transfer to adult care included a multidisciplinary team, comprehensive education, and a structured transfer system.

Conclusion: Hemophilia care in a limited-resource setting posed some challenges, mostly related to treatment and chronic arthropathy. There were also some concerns regarding the transfer of care to adults. Key requirements for a successful transfer included a multidisciplinary care team, continuous education, and a structured transition system.