Current Status and Challenges in Delivering Comprehensive Care for Patients with Hemophilia

Abstract

The importance of comprehensive care as a treatment strategy for patients with hemophilia is recognized worldwide. Comprehensive care entails addressing full spectrum of medical and psychological aspects impacting both patients and their families. The primary objective of comprehensive care for individuals with hemophilia is to enable them to lead their daily lives just as anyone else would. To achieve this goal, it is necessary to have a positive and collaborative approach across various healthcare disciplines. This extends beyond clinical specialists, encompassing pediatricians, hematologists, orthopedic surgeons, dental and oral surgeons, gynecologists, nurses, physical therapists, clinical psychologists, and other professionals from diverse fields. This review article discusses the current status and challenges associated with comprehensive care for patients with hemophilia. We categorize these challenges as follows: hemophilic arthritis, rehabilitation, oral care, transitioning from pediatric to adult care, addressing carrier issues, and providing psychological care. There is still substantial work to be undertaken in addressing these hurdles and advancing the quality of comprehensive care for hemophilia patients.

Keywords:

• hemophilia
• comprehensive care
• collaborative approach
• psychological care
• carrier issues

Acknowledgments

The author thanks Ryosuke Matsuno, Yukihiro Noda, Taichi Omachi, Takashi Yamazoe, Minoru Murata, Fumito Kobayashi, Yuka Kojima, Shunsuke Sawada, Aya Yoshida, Akio Kamiya, Meguru Taguchi, Shun Ito, Reimi Matsuda, Akiko Matsumoto, Chika Sato and Saki Shimada, participating members of the Hemophilia Comprehensive Care at Kansai Medical University.

Disclosure

S. Nomura: Received honoraria for participation in lectures from Chugai, Novo Nordisk, Sanofi, CSL Behring, Takeda, and Japan Blood Products Organization. The author reports no other conflicts of interest in this work.