The provision of assistive devices and home adaptations to patients with ALS in the Netherlands: Patients’ perspectives

Abstract

The timely provision of assistive devices and home adaptations (ADHA) is crucial in the management of patients with amyotrophic lateral sclerosis (ALS) in order to maintain their independence and relieve their caregivers. Our objective was to study the experiences of patients with ALS during the process of procuring ADHA. We sent a cross-sectional questionnaire survey addressing issues concerning the application for and provision process of ADHA to 239 patients with ALS registered at one of the three tertiary academic diagnostic centres within the Netherlands ALS Centre. One hundred and fifty-nine (89%) of the 179 responding patients (response rate 75%) had experience with the procurement process and 93 (58%) of them indicated problems in obtaining ADHA. The most reported problems were delay (42%) and the authorities’ lack of disease knowledge (24%). Patients viewed these issues as the most prominent requiring improvement. In conclusion, the main problems perceived by patients indicate that increasing awareness of ALS and promoting a proactive attitude among ALS care professionals towards the application for ADHA may contribute positively to the quality of ALS care.

Key words::

• ALS
• assistive devices
• home adaptations
• quality of care
• quality of life

Acknowledgements

The authors wish to thank the individuals with ALS for participating in this research survey. We are grateful to L.G. Grosze Nipper and K. Grosze Nipper for their initiative which resulted in this survey and L.G. Grosze Nipper and A. Boutkan for funding and for collecting the data.

This study was supported by a grant from L.G. Grosze Nipper and A. Boutkan.

Declaration of interest: L.H. van den Berg received travel grants and consultancy fees from Baxter; serves on scientific advisory boards for Prinses Beatrix Spierfonds, Thierry Latran Foundation, and Biogen Idec; serves on the editorial board of Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration and the Journal of Neurology, Neurosurgery & Psychiatry; and receives research support from the Prinses Beatrix Spierfonds, Netherlands ALS Foundation, VSB Fonds, Adessium Foundation, the European Community's Seventh Framework Programme and The Netherlands Organization for Health Research and Development (ZonMw). The authors alone are responsible for the content and writing of the paper.