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

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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.


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


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.


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.

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