Related Experiment Videos
Using research to develop care for patients with Huntington's disease
1Tauton and Somerset Hospital, Musgrove Park, Taunton.
Insights
Huntington's disease (HD) care presents challenges, with a Somerset survey revealing 73 unmet needs among 25 patients. This study outlines a model to address these gaps for long-term neurodegenerative disorder patient care.
Area of Science:
- Neurology
- Genetics
- Public Health
Background:
- Huntington's disease (HD) is a progressive, dominantly inherited neurodegenerative disorder.
- HD affects 5-10 per 100,000 people in the UK, causing movement, cognitive, and psychological issues.
- The long-term nature of HD necessitates comprehensive and continuous care, impacting patients and carers significantly.
Purpose of the Study:
- To identify and quantify the unmet health and social care needs of Huntington's disease patients and their carers.
- To develop and describe a model of care to address identified needs in Somerset.
- To propose a transferable care model for other complex, long-term diseases.
Main Methods:
- A survey was conducted with 25 diagnosed Huntington's disease patients in Somerset.
- The survey assessed 12 categories of potential care needs, totaling 300 possible needs.
- Unmet needs were identified and analyzed to inform care planning.
Main Results:
- A total of 73 unmet care needs were identified across the surveyed group.
- Needs spanned various categories including housing, dietary advice, and carer support.
- The findings highlight significant gaps in current care provision for HD patients.
Conclusions:
- The Somerset survey identified substantial unmet needs in Huntington's disease care.
- A proactive model of care has been developed to address these needs.
- This care model may be applicable to patients with other complex, chronic conditions.
Abstract:
Huntington's disease (HD) is a progressive neurodegenerative disorder affecting approximately 5-10 per 100,000 people in the UK (Harper, 1992). This dominantly inherited genetic condition causes movement disturbance (especially chorea), depression and dementia. The complex physical, mental, psychological and social problems caused by HD can result in particular difficulties in care. The course of the disease may span 15-20 years from diagnosis to death, necessitating long-term nursing care. The NHS and Community Care Act 1990 has made statutory provision for patients to be cared for at home if they so wish, placing a greater onus of care on the primary healthcare team. A survey of 25 patients in Somerset who had been diagnosed with HD was recently undertaken to ascertain the health and social care needs of patients and their carers. Of a possible 300 care needs in 12 categories (e.g. housing, dietary advice, carer support), 73 unmet needs were identified in this group. Using the survey as a basis, this article describes the steps taken in Somerset to ensure that the future needs of this group of patients are fulfilled. This model may be appropriate for the care of patients with other complex long-term diseases.