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Abstract
BACKGROUND: In the Netherlands, rehabilitation medicine plays an important role in the symptomatic and palliative treatment of ALS patients. Detailed information about the actual care of ALS patients in the Netherlands and about the attitude of consultants in rehabilitation medicine towards the management of this disease was lacking.
OBJECTIVE: To obtain detailed information about the rehabilitation care for patients with ALS in the Netherlands.
METHODS: We have performed a survey among all consultants in rehabilitation medicine in the Netherlands, using a questionnaire about the organisation of care and the care management of ALS patients.
RESULTS: Two hundred eighty one questionnaires were gathered with a response rate of 98%. There were 14 specialised ALS centres spread throughout the country, except in the northwest and southwest. Most consultants worked with an ALS multidisciplinary team and most patients were treated in an outpatient rehabilitation clinic. Follow up visits were performed in most cases 5–6 times per year. The majority of the patients were followed up until death. The Dutch protocol for rehabilitative management in ALS was used in 89% of all treated ALS patients. Follow up and care management was not different in the specialised centres compared with the non‐specialised centres.
CONCLUSION: In conclusion, this study indicated that the actual care for ALS patients was reasonably well organised in the Netherlands, based on the results and reactions of the consultants in rehabilitation medicine.