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

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.