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Related Experiment Videos

Using research to develop care for patients with Huntington's disease

H Skirton1, N Glendinning

  • 1Tauton and Somerset Hospital, Musgrove Park, Taunton.

British Journal of Nursing (Mark Allen Publishing)
|January 12, 1997
PubMed
Summary

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.

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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.

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  • 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.