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The Patient Education Program for Huntington's Disease (PEP-HD)

Article type: Research Article

Authors: A'Campo, Laura E.I. | Spliethoff-Kamminga, Noëlle G.A. | Roos, Raymund A.C.

Affiliations: Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands

Note: [] Correspondence to: Laura E.I. A'Campo, MSc, Department of neurology, Leiden University Medical Center, PO Box 9600, Leiden 2300 RC, The Netherlands. Tel.: +31 71 5265780; Fax: +31 71 5248205; E-mail: [email protected]

Keywords: Huntington's disease, psychosocial aspects, training support, caregivers

DOI: 10.3233/JHD-2012-120002

Journal: Journal of Huntington's Disease, vol. 1, no. 1, pp. 47-56, 2012

Published: 2012
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Abstract

The goal of the Patient Education Program for Huntington's disease is to improve quality of life for patients and caregivers, to educate and train them in order to develop coping strategies to deal with psychosocial stressors. The program was derived from a standardized evidence-based program for Parkinson's disease. This pilot study assessed the feasibility of the program in Huntington's disease. Forty manifest patients with 28 caregivers and 19 premanifest carriers with 14 partners participated. Assessments for depression and anxiety, psychosocial burden, need for help, quality of life, coping, behavioral, motor and cognitive status were performed. After program completion, significant improvement of behavioral symptoms and anxiety was found for manifest HD patients, and they used a less passive coping style and more social support. Their caregivers reported less psychosocial burden. Premanifest carriers and their partners improved their coping by seeking social support more often. This pilot study demonstrated the feasibility of the program in Huntington's disease, especially in the manifest stage of the disease. Further research to assess the effectiveness of the program seems warranted.

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