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.
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