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Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study

Authors :
Charlotte Ytterberg
Kristina Gottberg
Petter Sandstedt
Marie Kierkegaard
Sverker Johansson
Susanne Littorin
Lotta Widén Holmqvist
Source :
Journal of Neuromuscular Diseases
Publication Year :
2021
Publisher :
IOS Press, 2021.

Abstract

Background: Patients with amyotrophic lateral sclerosis (ALS) need a large amount of healthcare services. Knowledge on use of and satisfaction with healthcare is, however, scarce. Objective: The objectives were to explore use and satisfaction of healthcare in patients with ALS. Methods: The sample consisted of patients with ALS, recruited from the ALS clinic at the Karolinska University Hospital, Stockholm, Sweden, participating in a three-year observational study. Data on healthcare utilisation were retrieved from the computerised register at Region Stockholm, Sweden. Information regarding disability, contextual factors and satisfaction with care was collected by home visits. Results: Over time, half, or less of the patients used inpatient care, whereas all used outpatient care. Half of all outpatient contacts were with providers of advanced healthcare in the home and one-fifth with allied health professionals. Nurses performing home visits composed the largest proportion of outpatient contacts. A small amount of the utilised outpatient care emerged from the ALS clinic. Patients with severe disease and longer time since diagnosis had fewer contacts with the ALS clinic. Satisfaction with care was in general stable over time with around two-thirds or more of patients being satisfied. Most patients wanted to participate in care planning, but few had. Conclusion: Patients with ALS use hospital-based specialist care and other outpatient care in parallel with many healthcare providers involved. Our findings highlight the need for implementation of person-centred care to improve both coordination of care, care transitions and satisfaction with healthcare services.

Details

ISSN :
22143602 and 22143599
Volume :
8
Database :
OpenAIRE
Journal :
Journal of Neuromuscular Diseases
Accession number :
edsair.doi.dedup.....01d3909c1fe1dee40cb64d45d06a937c
Full Text :
https://doi.org/10.3233/jnd-210687