Benchmarking Integrated Care for People Living With Huntington's Disease in England

Benchmarking Integrated Care for People Living With Huntington's Disease in England (Integrate-HD Study)

The survey and full study information can be accessed here: https://southampton.qualtrics.com/jfe/form/SV\_8iEedDJZy4xaiI6

The goal of this anonymous survey is to benchmark integrated care from the perspective of service users in adults living with Huntington's Disease, including informal caregivers. The main question it aims to answer is: Is standard of care for people living with HD in England person-centred integrated care from the perspective of service users?

Participants will complete a one-time anonymous survey either online or on paper, according to their preference, that takes an average of 20-30 minutes. Participants can take breaks as needed, picking up the survey from where it was paused.

Huntington's disease (HD) is a rare brain disease that affects people's coordination, thinking and behaviour. It is a hereditary condition, affecting families across generations. Because its complex, it requires different sectors working together. Different surveys can be found in long term neurological conditions indicating care fragmentation and unmet severe needs, but evidence in HD is sparse.

Two surveys were identified covering people's needs in the UK, dated from 2006 and 2010. When looking for models or approaches tested to improve outcomes for people living with HD, no studies were found. This is an underserved population with complex needs and care gaps that remain unaddressed.

Little is known about to what extent people living with HD are experiencing care coordination between services and sectors in England. Integrate-HD aims to find out what good, joined-up care looks like. The study will explore the views and experiences of people living with HD, to identify the changes needed to improve people's care and quality of life.

Integrate-HD is a national survey to benchmark integrated care from the perspective of people living with HD, including informal caregivers.

The study objectives are to:

1. Characterise and classify systems/organisations in England involved in HD care in relation to person-centred integrated care from the perspective of users.
2. Identify areas considered integrated by service users.
3. Identify areas considered fragmented by service users.
4. Map care resources used by people living with HD in England.
5. Identify unmet care needs that need improvement.

Inclusion Criteria:

Adults with capacity living in England and fluent in English that are:

• A person at risk of HD (where at least one parent is diagnosed with HD, therefore their offspring has 50% chance of developing the disease);
• A person diagnosed with HD symptomatic or asymptomatic (after undergoing gene testing and having a positive result);
• An informal caregiver supporting someone living with HD;
• A former informal caregiver with experience of supporting someone living with HD in the last 3 years.

Exclusion Criteria:

• Below 18 years old;
• Not fluent in English;
• A person without capacity.