Evidence map›Paper›PMID 32578287›Full record

ReviewHealth expectations : an international journal of public participation in health care and health policy2020

'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis.

Jane Desborough, Crystal Brunoro, Anne Parkinson, Katrina Chisholm, Mark Elisha, Janet Drew, Vanessa Fanning, Christian Lueck, Anne Bruestle, Matthew Cook and 4 more

Open access · goldAbstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers, 6 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
41citing papers in PubMed, 6 pooled it
5.2field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

41 citing papers in PubMed, 6 syntheses or guidelines pooled it, 78 citations in OpenAlex.

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  10. Barriers and facilitators to self-management in people living with a lower-grade glioma.Journal of cancer survivorship : research and practice · 2025
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  17. Living With Multiple Sclerosis: The Rainbow of Inspiring Experiences and Resilience in the Face of the Disease.Health expectations : an international journal of public participation in health care and health policy · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors at 1 institution in 1 country.

Jane DesboroughDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.ORCID 0000-0003-1406-4593
Crystal BrunoroDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Anne ParkinsonDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.ORCID 0000-0001-9053-0707
Katrina ChisholmDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Mark ElishaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Janet DrewDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Vanessa FanningDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Christian LueckAustralian National University Medical School, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Anne BruestleJohn Curtin School of Medical Research, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Matthew CookAustralian National University Medical School, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
Hanna SuominenSchool of Computer Science, College of Engineering and Computer Science, Australian National University, Canberra, ACT, Australia.
Antonio TricoliResearch School of Electrical Energy & Materials Engineering, College of Engineering and Computer Science, Australian National University, Canberra, ACT, Australia.
Adam HenschkeNational Security College, College of Asia and the Pacific, Australian National University, Canberra, ACT, Australia.
Christine PhillipsAustralian National University Medical School, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.ORCID 0000-0001-5602-3664
Australian National University · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPeople with multiple sclerosis (MS) have varied experiences and approaches to self-management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.

methodsA meta-synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge-users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease.

resultsOf 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health-care sector; and work, social and family life).

conclusionThe majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

Indexed as

Multiple SclerosisHumansQualitative ResearchMSmultiple sclerosispatient experienceperceptionsreview literature

Identifiers

PMID32578287
PMCPMC7696124
OpenAlexW3037003350

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.