What is the study about?
People living with Huntington’s disease require care from different professionals in health and social care. People's needs are complex due to the variety of symptoms involved and due to the different professionals needed for their care. This coordination is often difficult to achieve, and people report fragmented care and unmet care needs.
Integrate-HD aims to understand how satisfied people living with Huntington’s disease are with the care they are receiving and how are the care and the resources different across England. Through this study, they will identify what care people receive, what they need, and what needs to happen to meet the gap. What works well in care and what needs improvement?
Who can take part?
Looking for adults (people aged 18 and above) living in England that are:
- At risk of Huntington's disease
- Diagnosed with Huntington's disease
- Supporting someone living with Huntington's disease (partner, spouse, son/daughter, sibling, friend, etc.)
- Former carers that would have supported someone living with Huntington's disease in the last three years
What do I need to do?
All you need to do is complete one anonymous survey [average completion time 20-30 minutes].
Complete the survey
To request a paper survey email me at s.m.bartolomeu-pires@soton.ac.uk . You will be sent the survey with a pre-paid self-addressed envelope, so all expenses are covered by the study.
If you would like more information about taking part in the Integrate-HD study, please contact Sandra Bartolomeu Pires, nurse PhD candidate at the University of Southampton, at s.m.bartolomeu-pires@soton.ac.uk
Twitter: @BartolomeuPires
Download the participant information sheet
