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H14 Functioning, quality of life, and end of life care of patients with huntington’s disease living in long-term care facilities: the advanced hd study design
  1. Marina Ekkel1,
  2. Els Verschuur2,
  3. Marja Depla1,
  4. Ruth Veenhuizen3,
  5. Bregje Onwuteaka-Philipsen4,
  6. Cees Hertogh1
  1. 1Department of General Practice & Elderly Care Medicine, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, the Netherlands
  2. 2HAN University of Applied Sciences, Nijmegen, the Netherlands
  3. 3University Network of Organisation of care for the elderly (UNO-VUmc), VU University Medical Center, Amsterdam, the Netherlands
  4. 4Department of Public and Occupational Health, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, the Netherlands


Background Care for patients with Huntington’s disease (HD) in long-term care facilities (LTCFs) is complex and practice-based, consisting of interventions developed through years of experience. Little is known about the functional status, quality of life of these patients and end-of-life care, particularly advance care planning and patients’ perceptions of end-of-life.


  • Gain insight in motor, psychiatric, and cognitive symptoms, functional ability and quality of life of HD patients living in specialized LTCFs.

  • Gain insight in perceptions of HD patients concerning their future and end-of-life, and whether these perceptions change over time.

  • Gain insight in views of elderly care physicians on advance care planning and palliative care for HD patients.

Methods This study consists of two parts: 1) a cross-sectional, descriptive study 2) a qualitative study.

Results/outcome Data on the functional status and quality of life are collected in the period September 2017 – May 2019. We aim to include 250 HD patients living in 9 LTCFs in the Netherlands. The data will be obtained using observation scales and questionnaires. Data on end-of-life care are obtained by conducting multiple in-depth interviews every 6 months for the period of 2 to 2,5 years with 10–15 HD patients, and one in-depth interviews with elderly care physicians. Results are expected in 2021.

Conclusions This study will provide valuable information on the functional status, quality of life and end-of-life care of HD patients living in LTCFs. Results may provide an evidence base to develop specific guidelines for care of institutionalized HD patients.

  • Quality of life
  • end of life care
  • functional ability

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