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K16 Patient and informal caregiver outreaching care for huntington’s (PICOH): a pilot study on crisis occurrence and prevention
  1. Ruth Veenhuizen,
  2. Laura van Buul,
  3. Elles Messchaert,
  4. Cees Hertogh
  1. Department of general practice and elderly care medicine, VU University Medical Centre UNO-VUmc, Amsterdam, The Netherlands


Background The occurrence of ‘crises’ – e.g. accidents, agression, dismissal, divorce, suicide – is high among Huntington’s Disease (HD) patients. These ‘crises’, combined with the occurrence of disinhibited behaviour and the degenerative nature of HD, pose high burden on informal caregivers, which frequently results in nursing home admission of the patient.

Aims In this study, we aim to evaluate the feasibility of including ambulatory HD patients and their caregivers referred to an outpatient clinic for coordinated multidisciplinary HD care, and on the feasibility of measuring several outcome measures in this patient/caregiver group. If this pilot study is successful, we aim to conduct a larger study to investigate whether outreaching multidisciplinary care for HD patients results in crises-reduction and postponing nursing home admission, and at what costs.

Methods Ten HD patients and caregivers, who are newly referred to the outpatient clinic, will be included in the study. At the time of referral and five months after receiving multidisciplinary care coordinated by the outpatient clinic, data will be verbally collected from patients on: crises, quality of life, functioning and experienced problems. Informal caregivers fill out a questionnaire covering burden, quality of life and experienced problems. In addition, data on care consumption, medication use and costs is collected through an online patient diary and by reviewing patient files at general practice.

Discussion This session addresses feasibility of the described pilot study. In addition, we will present our preliminary results on characteristics of the patient-informal caregiver couples that are referred to the outpatient clinic.

  • crisis
  • outreaching care
  • therapy

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