Name Annerieke van Groenestijn
Department of Rehabilitation and Sports Medicine, Rehabilitation Centre De Hoogstraat
Section Neuromuscular diseases
Function PhD-student
E-mail:
a.v.groenestijn@dehoogstraat.nl Tel: +31 30-2561366
Supervisor Prof. Dr. E. Lindeman, Prof. Dr. L.H. van den Berg, Dr. M. Post
Title research Quality of Life and Rehabilitation Care in Amyotrophic Lateral Sclerosis
Summary research Introduction: In patients with Amyotrophic Lateral Sclerosis (ALS), muscle weakness may result in avoidance of physical activity, which consequently enhance the disuse weakness and cardiovascular de-conditioning. The impact of the infaust prognosis may result in depressive symptoms and hopelessness. We hypothesize that, to preserve daily activity and Quality of Life on the highest achievable level, two different therapeutic interventions (A and B) may be added to the current multidisciplinary treatment program.
Aims: (1) To study the efficacy of the interventions for improving activities and QoL in patients with ALS; (2) To identify determinants of effectiveness of the interventions.
Patients: We aim to recruit 120 ALS-patients from 3 different university hospitals.
Methods: A multi-centre, single-blinded RCT will be conducted. A “postponed” information model will be used. Patients will be randomised to one of three groups i.e. (1) intervention A; 16 weeks + usual care. (2) intervention B; 16 weeks + usual care. (3) Usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, quality of life (ALSAQ-40, SF-36) and activities (LAPAQ, IPA) will be assessed.
Results: We hypothesize that interventions A and B are both effective in improving activities and HRQoL compared to usual care. We expect new insights into the underlying working mechanisms for both interventions.
Conclusions: This study will generate new evidence for the rehabilitation treatment of ALS-patients.