Evidence map›Paper›PMID 33528002›Full record

ArticleRheumatology (Oxford, England)2021

Patient perceptions of health-related quality of life in giant cell arteritis: international development of a disease-specific patient-reported outcome measure.

Joanna C Robson, Celia Almeida, Jill Dawson, Alison Bromhead, Emma Dures, Catherine Guly, Elizabeth Hoon, Sarah Mackie, Mwidimi Ndosi, John Pauling and 1 more

Open access · hybridAbstract read
In one paragraph

Article in Rheumatology (Oxford, England), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 1 pooled it
1.8field-weighted citation impact, top 15% 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

12 citing papers in PubMed, 1 synthesis or guideline pooled it, 18 citations in OpenAlex.

  1. Pooled it
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  3. Article
  4. Review
  5. Article
  6. Review
  7. Article
  8. Article
  9. Article
  10. Review
  11. Looking ahead: giant-cell arteritis in 10 years time.Therapeutic advances in musculoskeletal disease · 2022
    Review
  12. 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

11 authors at 7 institutions in 2 countries.

Joanna C RobsonCentre for Health and Clinical Research, University of the West of England.ORCID 0000-0002-7939-5978
Celia AlmeidaCentre for Health and Clinical Research, University of the West of England.
Jill DawsonNuffield Department of Population Health (HSRU), University of Oxford, Oxford, UK.
Alison BromheadBristol Royal Infirmary, University Hospitals and Weston Bristol NHS Foundation Trust, Bristol.
Emma DuresCentre for Health and Clinical Research, University of the West of England.
Catherine GulyBristol Royal Infirmary, University Hospitals and Weston Bristol NHS Foundation Trust, Bristol.
Elizabeth HoonSchool of Public Health, University of Adelaide, Adelaide, SA, Australia.
Sarah MackieLeeds Institute of Rheumatic and Musculoskeletal Medicine, NIHR (National Institute for Health Research) Leeds Biomedical Research Centre, University of Leeds.ORCID 0000-0003-2483-5873
Mwidimi NdosiCentre for Health and Clinical Research, University of the West of England.ORCID 0000-0002-7764-3173
John PaulingDepartment of Rheumatology, Royal National Hospital for Rheumatic Diseases.ORCID 0000-0002-2793-2364
Catherine HillSchool of Public Health, University of Adelaide, Adelaide, SA, Australia.
University of the West of England · GBUniversity Hospitals Bristol NHS Foundation Trust · GBNational Health Service · GBRoyal Adelaide Hospital · AURoyal National Hospital for Rheumatic Diseases · GBThe University of Adelaide · AUUniversity of Oxford · GB

Funding

Above and Beyond Grant University Hospitals Bristol NHS Foundation Trust and QR FundingDepartment of Health NIHR-CS-012-016Department of Health PB-PG-1217-20017University of the West of England
6 · The paper itself

Abstract

objectivesGCA is a large vessel vasculitis (LVV) presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL-6 tocilizumab in refractory disease. The objective of this study was to explore the impact of GCA and its treatment on people's health-related quality of life (HRQoL), to inform the development of a disease-specific patient-reported outcome measure (PROM) for use in clinical trials and practice.

methodsParticipants from the UK and Australia, with biopsy- or imaging-confirmed GCA, were interviewed to identify salient aspects of HRQoL in relation to GCA and its treatment. Purposive sampling included a range of demographic and disease features (cranial, LVV-GCA and visual involvement). Inductive analysis identified individual themes of importance, then domains. Candidate questionnaire items were developed from the individual themes, refined by piloting, cognitive interviews and a linguistic translatability assessment.

resultsThirty-six interviews were conducted to saturation with participants with GCA from the UK (25) and Australia (11). Mean age was 74 years, 23 (63.9%) were female, 13 (36.1%) had visual loss and 5 (13.9%) had LVV-GCA. Thirty-nine individual themes within five domains were identified: physical symptoms; activity of daily living and function; participation; psychological impact; and impact on sense of self and perception of health. Sixty-nine candidate items were developed from individual themes; piloting and refinement resulted in a 40-item draft questionnaire.

conclusionThis international qualitative study underpins the development of candidate items for a disease-specific PROM for GCA. The draft questionnaire is now ready for psychometric testing.

Indexed as

Patient Reported Outcome MeasuresAgedAntibodies, Monoclonal, HumanizedAustraliaCost of IllnessDiagnostic Self EvaluationFemaleFunctional StatusGiant Cell ArteritisGlucocorticoidsHumansMaleQualitative ResearchQuality of LifeSelf ConceptSocial ParticipationAntibodies, Monoclonal, HumanizedGlucocorticoidstocilizumabgiant cell arteritispatient reported outcomequality of life

Identifiers

PMID33528002
PMCPMC8487303
OpenAlexW3121991946

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.