Study by HCD Economics and DeltaQuest Foundation

Can you help?

We have been asked by the HCD Economics and DeltaQuest Foundation to help promote this study. The aim of the study is to explore the impact of living with haemophilia on goal horizons and goal attainment for patients and their caregivers.

The study is vital to enhance our understanding of the impact the condition has on the lives of people with haemophilia and their families. This is the first study of its kind, and will serve to improve the evidence base upon which decisions about investment in haemophilia are taken. Your input is vital in ensuring the real burden faced by people with haemophilia and their families is recognised and recorded.

The information gathered will be of use at both European and local levels in supporting communications and activities, which we hope will result in better standards of care in haemophilia.

Please note that:
• The questionnaire should take about 22 minutes for patients and 30-38 minutes for caregivers to complete.
• The questionnaire asks for personal identifying information in order to link patient and caregiver responses.
• Your responses will remain completely confidential, and will not be shared with haematologist or any other third parties.
• You may be re-contacted in the future regarding a one-year follow-up study if we are able to procure funding for the project.
• The information that you provide in this questionnaire will have no direct impact on the current or future treatment of your haemophilia.

Click here for the survey.