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Orphanet Journal of Rare Diseases

, 6:77

First Online: 18 November 2011Received: 02 July 2011Accepted: 18 November 2011DOI: 10.1186-1750-1172-6-77

Cite this article as: Veenhuizen, R.B., Kootstra, B., Vink, W. et al. Orphanet J Rare Dis 2011 6: 77. doi:10.1186-1750-1172-6-77


BackgroundA multidisciplinary outpatient department was set up in the northern part of the Netherlands because of a local lack of adequate treatment and care for Huntington-s disease HDpatients. Outreaching multidisciplinary care is a novel way to optimise functioning and quality of life of HD patients. The vast majority of patients want to stay home as long as possible. Huntington-s disease is a devastating neurodegenerative disorder leading to complete disability and long term residence in a specialised institution. In this paper we outline this new type of treatment and give the results of 1.5 year, we also present the results of an inquiry on the appreciation of the working method.

MethodsIn the first project half 1.5 yr 28 patients were seen as had been anticipated. The multidisciplinary team consisting of an institutional physician, a psychologist, a speech and language therapist, a social worker, an occupational therapist and a case manager, assesses the stage of the disease and formulates, coordinates and implements the individual care and treatment plan in the home situation. After 1.5 year a questionnaire on the appreciation of the department was sent to patients, caregivers, healthcare professionals, the lay organisation and Dutch -experts in the field-.

ResultsFor the 28 HD patients a total of 242 problems and actions were verbalised in the care plan, which was accepted by the majority of the patients. Especially informal caregivers, the lay organisation and the Dutch -experts in the field- were enthusiastic on the outreaching and multidisciplinary nature of the department. The verdict over the continuance of the clinic was positive and unanimous.

ConclusionsWe concluded that coordinating outreaching multidisciplinary care from an outpatient clinic into the dwelling place of the patient is feasible and appreciated.

KeywordsHuntington-s disease Coordinated care Multidisciplinary care Outpatient List of abbreviationsHDHuntington-s disease

GPGeneral practitioner.

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Autor: Ruth B Veenhuizen - Branda Kootstra - Wilma Vink - Janneke Posthumus - Pleuntje van Bekkum - Margriet Zijlstra - Jelleke D


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