How do you make decisions about your/your child’s hemophilia treatment?
We are exploring how patients with hemophilia and caregivers of children with hemophilia engage in decision-making together with their healthcare team, a process called shared decision-making (SDM). The research is being done by the research team Sprout Health Solutions on behalf of Hoffmann-La Roche Limited.
What does the study involve?
You will be asked to participate in a conversation with your peers (a focus group) and/or a one-on-one interview. Conversations will explore what impacts your shared decision-making and possible tools that support your conversations with your healthcare team. You will receive $75/hr compensation for your time.
You will be asked to participate in a conversation with your peers (a focus group) and/or a one-on-one interview. Conversations will explore what impacts your shared decision-making and possible tools that support your conversations with your healthcare team. You will receive $75/hr compensation for your time.
Who is eligible?
- Adults (18+ years) diagnosed with moderately severe or severe hemophilia A or B, without current FVIII inhibitors and currently receiving prophylaxis or on-demand treatment OR
- Adolescents (12-17 years) diagnosed with moderately severe or severe hemophilia A or B, without current FVIII inhibitors and currently receiving prophylaxis or on-demand treatment OR
- Caregivers of children (<12 years) with moderately severe or severe hemophilia A or B, without current FVIII inhibitors currently receiving prophylaxis or on-demand treatment
- Can speak fluently in English
Please note, adolescents eligible for the study are required to have consent from their caregiver prior to participation.
If interested, please contact SDMstudy@sprout-hs.com