Background:
For people with hemophilia, mild trauma can cause internal joint bleeding resulting in stiffness and pain, limited range of motion and irreversible bony changes. Ankle pain may occur early in life affecting the ability to participate in activities of daily living, work and leisure. The purpose of this study was to explore experiences and priorities of people with hemophilia regarding their foot and ankle function, activity and participation.
Methods:
Eleven participants with hemophilia A or B, twenty-one years and older with a history of ankle pain, were recruited. Semi structured interviews were recorded, transcribed and then analyzed for themes with NVivo 10 Software.
Results:
Themes: (1) "Pain impacts my daily life, but I still have to get things done." (2) "Management of ankle function is highly individualized." (3) "Self-advocacy is crucial." (4) "I want healthcare providers who listen to me and respect my knowledge."
Conclusions:
For our participants, ankle pain and dysfunction impact daily life. Expressed themes highlighted priorities for participation, health management and desired healthcare.
Discussion:
As health care moves from volume-based to value-based care delivery, the patient’s voice is increasingly important in prioritizing interventions. The participant-identified priorities and experiences from our study can begin to inform healthcare providers, allowing them to deliver more targeted care for their patients with hemophilia.