Background In the Northern part of the Netherlands historically there was a lack of adequate care for Huntington's disease (HD) patients. As an innovative project, coordinated multidisciplinary care for HD patients was started from an out-patient department. This type of care includes an assessment of the disease and its burden to the patient and direct caregivers during a half-day visit to the clinic. The team consists of a doctor, psychologist, occupational therapist, speech and language therapist, a social worker and a case manager. At the end of the visit a care plan is provided to the patient with specialised implementation at home. The plan includes explanation of symptom management to patient and caregivers, both family and professional. In the vast majority of cases there is extensive coordination of care at home. Each half year the patient is reassessed and the care plan is evaluated and adjusted to the actual situation. After 18 months the project was evaluated through an inquiry into the appreciation of the working method.
Aim To investigate the appreciation by patients, informal caregivers and healthcare professionals on this new type of outreaching care for HD patients
Method A questionnaire with a mixture of 10 open and multiple choice questions was sent to 24 patients. Twenty direct caregivers, 60 involved healthcare professionals and 20 nursing teams received a questionnaire.
Results/outcome 73 out of 124 (59%) questionnaires were returned. 75% Of caregivers considered the HD outpatient program essential for the continuation of living at home On a scale of 0-10 (excellent) the mean overall score was 8±0.1.2 SD (for patients mean 7.9±1.7 SD, for caregivers mean 8.5±1.2 SD and for healthcare professionals mean 7.9±1.0 SD). All responders held the opinion that the out-patient department should continue with this type of care.
Conclusion Outreaching coordinated multidisciplinary care for ambulatory HD patients is appreciated by patients, caregivers and health care professionals.
- Coordinated care
- multidisciplinary care
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