Case management in patients with Amyotrophic Lateral Sclerosis and their caregivers

Previous research has shown that the quality of care for patients with ALS is insufficient, especially the collaboration of the various disciplines, timely delivery of the necessary aids and adaptations, the high frequency of unsatisfactorily treated, but well treatable symptoms and that the caregivers’ total burden is high.

Case management appears to be the organisational solution. The case manager may provide a better symptom control since the coordinating and steering function leads to early interventions and early solutions to problems. In a randomized controlled trial the effectiveness of case management during 1 year on the quality of life of ALS-patients and the caregiver burden will be investigated.

Case-management in ALS improves quality of life of ALS-patients and reduces the caregiver burden.

baseline (T0)

4 months (T1)

8 months (T2)

12 months (T3)

For 1 year a case manager maintains contact with ALS patients and their informal caregiver through home visits, telephone calls and e-mail designed to provide information regarding symptoms, aids and adaptations and interventions, to control disease symptoms, and to coordinate care with the person's specialized ALS care teams.