Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care: The Case for a Better Understanding of Patient Experiences
Open accessAbstract
People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals' conceptualization of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.
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Patients with MND identify the need to fight against the illness and not give into it.
“Patients identified the need to fight against the illness and not give into it (7, 11, 19).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [19]
Patients with motor neuron disease can be dissatisfied with the tangible and informational support provided by health care professionals.
“patients with MND can be dissatisfied with the tangible and informational support provided by health care professionals (Foley et al., 2012).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Foley et al., 2012
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- Authors
- Foley, G., Timonen, V., & Hardiman, O.
- Affiliations
- Trinity College Dublin (IE)
- Corresponding author
- Foley, Geraldine
- Venue
- American Journal of Hospice and Palliative Medicine®
- Publisher
- SAGE Publications
- Published
- 2011-10-13
- Volume
- 29
- Issue
- 5
- Pages
- 362-367
- ISSN
- 1049-9091 (ISSN-L)
- 1938-2715
- OpenAlex
- W2003600527
- Cited by
- 21
- References
- 75
- Citations by year
- 2026: 1 · 2025: 2 · 2023: 3 · 2021: 2 · 2020: 2 · 2017: 2 · 2016: 1 · 2015: 1 · 2014: 2 · 2013: 3 · 2012: 2
- FWCI
- 4.15
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Licence
- Locations
- American Journal of Hospice and Palliative Medicine® (publishedVersion)
- PubMed (publishedVersion)
- Trinity's Access to Research Output (TARA) (Trinity College Dublin) (submittedVersion, cc-by-nc-sa)
- Funders
- Health Research Board
- Trinity College Dublin
- Topics
- Health Sciences › Health Professions › General Health Professions › Patient Satisfaction in Healthcare
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Health Professions › Health Information Management › Healthcare Quality and Management
- Keywords
- amyotrophic lateral sclerosis, patient satisfaction, service user experiences, patient outcomes, patient perspectives, conceptual framework, satisfaction measurement instrument, end-of-life care
- MeSH terms
- Amyotrophic Lateral Sclerosis, Health Services Research, Humans, Palliative Care, Patient Care Team, Quality of Life, Treatment Outcome, Patient Satisfaction, Outcome Assessment, Health Care
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