Invisible bleeds: Lived experiences and barriers to care for men with hemophilia.

Introduction: Guidelines of the World Federation of Hemophilia support the provision of equitable, optimal care for people with hemophilia (PWH). However, limited research exists examining the lived experiences of PWH or the barriers to care they may encounter. The primary objective of this exploratory study was to describe the experiences of men with hemophilia in Canada.

"Everything was blood when it comes to me": Understanding the lived experiences of women with inherited bleeding disorders.

Introduction: Despite the many symptoms that women with inherited bleeding disorders experience, no study has specifically sought to explore and understand the lived experiences of these women, nor the barriers to care that they may encounter. The primary objective of this study was to describe the lived experiences of women with inherited bleeding disorders.

Methods: Inclusion criteria for study enrollment were the following: age ≥18 years, English speaking, and confirmed diagnosis of an inherited bleeding disorder.

Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders.

Introduction: The ways in which social determinants of health affect patients with inherited bleeding disorders remains unclear. The objective of this study was to understand healthcare provider perspectives regarding access to care and diagnostic delay amongst this patient population.

Methods: A healthcare provider survey comprising 24 questions was developed, tested, and subsequently disseminated online with recruitment to all members of The Association of Hemophilia Clinic Directors of Canada (N = 73), members of the Canadian Association of Nurses in Hemophilia Care (N = 40) and members of the Canadian Physiotherapists in Hemophilia Care (N = 44).

Bone health in symptomatic carriers of haemophilia A: a protocol for a multicentre prospective matched-cohort study.

Introduction: Haemophilia A is an X linked inherited bleeding disorder, caused by a decrease in coagulation factor VIII. Persons with haemophilia experience repeated musculoskeletal bleeding, which can lead to decreased range of motion, irreversible joint damage, low bone mineral density (BMD), and are at greater risk for osteoporosis. Women heterozygous for this mutation, also known as haemophilia A carriers, can have bleeding symptoms and even experience joint bleeding evidenced by radiological soft tissue and osteochondral changes.