Evidence map›Paper›PMID 41071349›Full record

ArticleRheumatology international2025

"My world has shrunk": a mixed-methods exploration of the impact of systemic autoimmune rheumatic diseases on patients' lives.

Martha A Piper, Alice Tunks, Sean Humfrey, Lucy Calderwood, Shaista Tayabali, Sydnae Taylor, Arvind Kaul, Ellie Dalby, Shihab Ahmed, Sue Farrington and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Rheumatology international, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
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

12 authors.

Martha A PiperDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UK. m.piper@gold.ac.uk.ORCID 0009-0009-1245-7837
Alice TunksDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
Sean HumfreyThe Wren Project, Pine Tree Nursery, Roundway, Devizes, UK.
Lucy Calderwood, London, UK.
Shaista Tayabali, London, UK.
Sydnae TaylorDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
Arvind KaulDepartment of Rheumatology, St George's Hospital, London, UK.
Ellie Dalby, London, UK.
Shihab AhmedDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
Sue Farrington, London, UK.
Thomas A PollakInstitute of Psychiatry, Psychology and Neuroscience, King's College London, South London and Maudsley NHS Foundation Trust, London, UK.
Melanie SloanDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

Funding

LUPUS UK LUPUS UKNational Institute for Health Research National Institute for Health ResearchThe Lupus Trust The Lupus TrustVasculitis UK Vasculitis UK
6 · The paper itself

Abstract

Systemic autoimmune rheumatic diseases (SARDs) can involve physical, cognitive and mental health symptoms which have widespread impacts on patients’ lives. Research has found SARDs patients have lower quality of life and higher depression and anxiety compared to controls even after multivariate adjustment. Aim: This study aimed to explore how SARDs impact patients’ daily activities, work, relationships, wellbeing and identity. Methods: We used mixed-methods, collecting survey and interview data. In the survey, SARDs patients (n = 1853) completed the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), our co-produced “ADAPT” measure, and questions about the frequency and impact of their symptoms. General population participants (n = 463) completed a modified survey. Survey responses were analysed using t-tests and correlation analyses. Interviews with SARDs patients (n = 34) explored the impact of SARDs on patients’ lives. Interviews and open-ended survey responses were analysed thematically. Results: Qualitative results highlighted how interacting, invisible and unpredictable symptoms impact patients’ relationships and participation in daily life. This was reflected quantitatively, where SARDs patients self-reported significantly lower satisfaction with life (mean difference=-13.244, p < 0.001) and participation in life (mean difference=-18.782, p < 0.001) compared to general population participants. Reduced participation, disbelief from others and changes in appearance damaged patients’ self-esteem and identity. In line with this, patients had significantly lower scores on every item of the WEMWBS compared to general population participants (overall mean difference=-6.467, p < 0.001). Physical, cognitive, mental, social and financial impacts of SARDs combined to adversely impact participation, relationships, and sense of self. Conclusion: Our findings call for the development of psychological, social and practical support options, in addition to improved disease control.

Indexed as

Autoimmune DiseasesQuality of LifeRheumatic DiseasesActivities of Daily LivingAdultAgedCost of IllnessFemaleHumansInterpersonal RelationsMaleMental HealthMiddle AgedPsychological Well-BeingSelf ConceptSurveys and QuestionnairesIdentityImpactMixed methodsRelationshipsSurveys and questionnairesSystemic autoimmune rheumatic diseaseWellbeing

Identifiers

PMID41071349
PMCPMC12513938

What Socratic 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 Socratic graph.