Challenges in Addressing Clinical and Psychosocial Issues in Young Adults with Hemophilia

Introduction

Hemophilia imposes a substantial emotional and psychological toll on people with hemophilia (PWH) as well as their families, spouses or partners, and caregivers. This has significant effects on quality of life for PWH and their loved ones and can also affect treatment of their bleeding disorder. Stress, anxiety, depression, and other psychological and psychiatric illnesses are common. Some PWH struggle on a regular basis with pain and its management. PWH also must cope with life transitions throughout adolescence and into young adulthood and beyond (including, but not limited to, changing from pediatric to adult care). These transitions may be more problematic in PWH compared with unaffected individuals.

This Clinical Consult addresses issues related to the treatment and management of PWH, using a case study to focus on psychosocial aspects of the disease. Appropriate management of hemophilia should address not only the physical aspects of the disease but also the psychosocial burden it can have on PWH and their families. Since many PWH experience some degree of hemophilia-related pain during their lifetime, effective pain management through pharmacologic and nonpharmacologic approaches can provide significant improvement in quality of life. 6,15, 32, 50 Proactively addressing key transition issues in both younger and older individuals can facilitate the move from a pediatric to an adult setting and help PWH manage important life challenges that are complicated by their disease. Additionally, potential communication barriers due to differences in language and culture must be recognized so the hemophilia treatment team can ensure that PWH and their families understand all treatment recommendations. This can maximize outcomes, especially for families whose first language is not English.