Optimizing quality of care for patients with ALS and their family caregivers

This thesis focussed on patients with amyotrophic lateral sclerosis (ALS) and their most important informal caregivers, and investigated previously identified bottlenecks in complex multidisciplinary ALS care: 1) prognostication of the rate of functional decline, 2) the procurement process of assistive devices and home adaptations, 3) supportive care for patients and their caregivers, and 4) caregiver strain. The overall aim of this thesis was to optimize multidisciplinary ALS care through expanding our knowledge on these bottlenecks. The systematic review showed that the current evidence on prognostic factors for functional decline is insufficient to develop a reliable prediction tool. In the procurement process of assistive devices and home adaptations, patients viewed time delay and the authorities’ lack of disease knowledge as the most prominent requiring improvement. The cluster randomized controlled trial showed that the intervention case management in addition to usual ALS care showed no benefit with respect to the patients’ quality of life, caregivers’ strain and the quality of care for the patients and their caregivers. A qualitative exploration of experiences with case management identified valued aspects of case management (accessibility, home visits and ample time, proactive approach and emotional support) that can be considered for implementation in multidisciplinary care. Finally, we investigated potential determinants of caregiver strain and identified coping behaviour and anxiety as factors related to strain that are potentially amenable to interventions. We conclude improved knowledge into the aforementioned bottlenecks and into clues for advances in ALS care, and present recommendations for optimizing multidisciplinary ALS care.