Development and implementation of the Dutch protocol for rehabilitative management in amyotrophic lateral sclerosis

INTRODUCTION: In the Netherlands, rehabilitation care plays an important role in the symptomatic and palliative treatment of ALS patients. However, until 1999 there were no guidelines or practice parameters available for the management of ALS. Therefore, the Dutch protocol for rehabilitative management in ALS was developed. We describe the development process, the outcome and implementation of the protocol. METHODS: A concept management protocol was written and the Delphi method was selected to develop the protocol further. This method comprises repetitive discussion sessions from postulates, using a combination of written questionnaires and work-conferences. Between 80 and 90 persons (rehabilitation team members of different professional backgrounds and neurologists) were involved in this process. The protocol was implemented by sending it to all consultants in rehabilitation medicine in the Netherlands; they were asked to inform all the treatment team members about the final protocol and to implement it in their treatment of ALS patients. RESULTS: The protocol was developed in 1999, implemented in 2000 and evaluated in 2001. Recommendations for improvement were made during the evaluation and improvements are currently being developed by an expert group. The protocol is widely used (88.9%) by consultants in rehabilitation medicine and their treatment teams in the Netherlands. CONCLUSIONS: The Dutch protocol for rehabilitative management was developed to provide an optimal and adequate care plan for patients with ALS. It is widely used in the Netherlands.