Ignite Creation Date:
2024-05-06 @ 6:54 PM
Last Modification Date:
2024-10-26 @ 2:57 PM
Study NCT ID:
NCT05828992
Status:
RECRUITING
Last Update Posted:
2023-05-19
First Post:
2023-04-12
Brief Title:
Benchmarking Integrated Care for People Living With Huntingtons Disease in England
Sponsor:
University of Southampton
Organization:
University of Southampton
Study Overview
Official Title:
Benchmarking Integrated Care for People Living With Huntingtons Disease in England Integrate-HD Study
Status:
RECRUITING
Status Verified Date:
2023-05
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
Integrate-HD
Brief Summary:
The survey and full study information can be accessed here httpssouthamptonqualtricscomjfeformSV_8iEedDJZy4xaiI6
The goal of this anonymous survey is to benchmark integrated care from the perspective of service users in adults living with Huntingtons 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
The goal of this anonymous survey is to benchmark integrated care from the perspective of service users in adults living with Huntingtons 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
Detailed Description:
Huntingtons disease HD is a rare brain disease that affects peoples 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 peoples 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 peoples 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 systemsorganisations 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
Two surveys were identified covering peoples 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 peoples 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 systemsorganisations 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
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None