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Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study
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 c...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
IOS Press
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8673529/ https://www.ncbi.nlm.nih.gov/pubmed/34057094 http://dx.doi.org/10.3233/JND-210687 |
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author | Kierkegaard, Marie Gottberg, Kristina Johansson, Sverker Littorin, Susanne Sandstedt, Petter Ytterberg, Charlotte Holmqvist, Lotta Widén |
author_facet | Kierkegaard, Marie Gottberg, Kristina Johansson, Sverker Littorin, Susanne Sandstedt, Petter Ytterberg, Charlotte Holmqvist, Lotta Widén |
author_sort | Kierkegaard, Marie |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8673529 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-86735292021-12-29 Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study Kierkegaard, Marie Gottberg, Kristina Johansson, Sverker Littorin, Susanne Sandstedt, Petter Ytterberg, Charlotte Holmqvist, Lotta Widén J Neuromuscul Dis Research Report 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. IOS Press 2021-11-02 /pmc/articles/PMC8673529/ /pubmed/34057094 http://dx.doi.org/10.3233/JND-210687 Text en © 2021 – The authors. Published by IOS Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Research Report Kierkegaard, Marie Gottberg, Kristina Johansson, Sverker Littorin, Susanne Sandstedt, Petter Ytterberg, Charlotte Holmqvist, Lotta Widén Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study |
title | Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study |
title_full | Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study |
title_fullStr | Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study |
title_full_unstemmed | Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study |
title_short | Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study |
title_sort | healthcare utilisation and satisfaction with care in patients with amyotrophic lateral sclerosis - an observational study |
topic | Research Report |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8673529/ https://www.ncbi.nlm.nih.gov/pubmed/34057094 http://dx.doi.org/10.3233/JND-210687 |
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