Hemophilia is the most common of the severe bleeding disorders and if not properly
managed since early infancy can lead to chronic disease and lifelong disabilities. However …

Background Carers of people living with rare diseases report heavy burden and a plethora
of unmet needs. A previous parental supportive care needs framework has described the …

Background There is a paucity of research examining the impact of informal caregiving on
parents of young children with cystic fibrosis (CF). The aim of this study was to examine …

Medical decisions in hemophilia care are primarily related to the type of factor replacement
and treatment regimen. With the growing number of treatment options for patients with …

Comprehensive evidence-based guidelines and well-validated assessment scales for pain
in people with hemophilia (PwH) are needed. Here, we report 28 statements covering five …

Abstract Background Hemophilia carriers (HCs) face specific psychosocial challenges
related to pregnancy, caused by their inherited bleeding disorder. Optimal support from …

Introduction Extended half-life factor products have reduced annualized bleeding rates in
hemophilia patients. The impact of extended half-life versus conventional factor products on …

Introduction Pain is a major clinical problem in patients with bleeding disorders. This study
aimed to determine the level of pain and how it is managed in children and adolescents with …

Introduction For persons with haemophilia A with factor (F) VIII inhibitors (PwHAwI), immune
tolerance induction (ITI) therapy is indicated for inhibitor eradication; however, since …

Aims The purpose of this article is to describe the psychometric development of the
Hemophilia Caregiver Impact measure. Methods Qualitative interviews (n= 22) and a cross …