title: 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.
authors.affiliation: Netherlands ALS Centre/Academic Medical Centre Amsterdam, Department of Rehabilitation , The Netherlands.
authors.forename: Huub
authors.initials: H
authors.lastname: Creemers
authors.forename: Anita
authors.initials: A
authors.lastname: Beelen
authors.forename: Hepke
authors.initials: H
authors.lastname: Grupstra
authors.forename: Frans
authors.initials: F
authors.lastname: Nollet
authors.forename: Leonard H
authors.initials: LH
authors.lastname: van den Berg
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology / Q000451:nursing* / Q000523:psychology*; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D003430:Cross-Sectional Studies; D005260:Female; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011788:Quality of Life; D012189:Retrospective Studies; D012656:Self-Help Devices; D011795:Surveys and Questionnaires
keywords: ALS; assistive devices; home adaptations; quality of care; quality of life