Background Outreaching coordinated multidisciplinary care for ambulatory Huntington's disease (HD) patients was developed since 2008 in the northern part of The Netherlands. The outpatient clinic team, embedded in a regular nursing home, performs problem analysis and composes a treatment, care and home implementation plan for each patient during a half day assessment as described before.1
Aims Description and evaluation of patient data on treatment and care coordinated through the clinic team.
Methods Data collected from the patients from the out patient clinic.
Results In 4 years 75 patients were included of which 29 were male and 46 female (age 20–79). Of these patients, 10 were already institutionalised before presentation. Another 10 patients were admitted to different nursing homes as part of the intervention. Eleven patients died over the last 4 years, (aspiration pneumonia 2, euthanasia 3, end stage HD with refractory symptoms 3, unknown 3). Of 44 patients living at home no one was working fulltime in their own job. 1/3 of the employable patients had financial problems due to unemployment. For each patient the care plan led to support for the system. The majority of the caregivers held the opinion that patients stayed at home longer due to the treatment, care and implementation plan.
Conclusions HD Patients in the northern part of the country experience severe problems and can be adequately supported by a proactive coordinating multidisciplinary team.
Reference 1. Veenhuizen RB, Tibben A. Coordinated multidisciplinary care for Huntington's disease. An outpatient department. Brain Res Bull 2009;80:192–5.