Evidence mapPaperPMID 42465839Full record

ArticleJRSM open2026

Symptom burden in multiple long-term conditions: An AI-supported, mixed-methods concept elicitation study.

Sarah E Hughes, Benjamin M A Hughes, Shamil Haroon, Eleanor Hathaway, Nicola Anderson, Christel McMullan, Michael Newnham, Clare Taylor, Alastair Denniston, Steven Backhouse and 16 more

Abstract read
In one paragraph

Article in JRSM open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

26 authors.

Sarah E HughesCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.ORCID https://orcid.org/0000-0001-5656-1198
Benjamin M A HughesCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.ORCID https://orcid.org/0009-0009-9788-2786
Shamil HaroonDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.
Eleanor HathawayDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.ORCID https://orcid.org/0000-0002-2637-1307
Nicola AndersonCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.
Christel McMullanCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.ORCID https://orcid.org/0000-0002-0878-1513
Michael NewnhamDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.
Clare TaylorDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.
Alastair DennistonNIHR Biomedical Research Centre, University of Birmingham, Birmingham, UK.
Steven BackhouseCwm Taf Morgannwg University Health Board, Princess of Wales Hospital, Bridgend, UK.
Andrew FilerNIHR Biomedical Research Centre, University of Birmingham, Birmingham, UK.
Karim RazaDepartment of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
Julia ScarisbrickUniversity Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.ORCID https://orcid.org/0000-0002-8011-4408
Clare AndersonCentre for Human Brain Health, School of Psychology, University of Birmingham, Birmingham, UK.
Matthew LeeDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.ORCID https://orcid.org/0000-0001-9971-1635
Lee WattsCwm Taf Morgannwg University Health Board, Princess of Wales Hospital, Bridgend, UK.ORCID https://orcid.org/0009-0008-5968-3922
Victoria Hodgetts MortonDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.
Sarah HillmanDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.
Faraz MughalDepartment of Applied Health Sciences, College of Medicine and Health, University of Birmingham, UK.ORCID https://orcid.org/0000-0002-5437-5962
Ed DayInstitute for Mental Health, School of Psychology, University of Birmingham, Birmingham, UK.
Tariq SamiSandwell and West Birmingham Hospitals (NHS) Trust, Birmingham, West Midlands, UK.ORCID https://orcid.org/0009-0009-2024-4401
Aliza JesaniWalsall Healthcare NHS Trust, Walsall, Birmingham, UK.ORCID https://orcid.org/0000-0002-1383-1167
Thomas JacksonDepartment of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
Philip CollisCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.
John Devin PeipertCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.
Melanie CalvertCentre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.ORCID https://orcid.org/0000-0002-1856-837X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: To develop the conceptual framework for an MLTC-specific patient-reported outcome measure (PROM), the Symptom Burden Questionnaire™ for MLTC (SBQ™-MLTC). Design: Mixed-methods study: (1) symptom list generation; (2) assessment of list face validity; and (3) construction of a conceptual framework. Setting: Concept elicitation and conceptual framework development using existing PROMs identified through the Mapi Research Trust PROQOLID eCOA database and AI-generated symptom lists. Participants: Fifty-one condition-specific PROMs with evidence of patient involvement during concept elicitation were included for symptom extraction. ChatGPT-4 generated symptom lists for 24 conditions prevalent in MLTC. Seventeen healthcare practitioners reviewed symptom relevance and contributed to refinement of the conceptual framework. Main outcome measures: Identification, refinement, and organisation of relevant MLTC symptoms into body system and functional domains, and development of the SBQ™-MLTC's conceptual framework. Results: ePROVIDE searches in July and August 2023 identified 51 condition-specific PROMs for 24 conditions prevalent in MLTC. ChatGPT-4 was prompted to generate a list of 75 symptoms for each condition. A merged list of 2202 symptoms was iteratively reduced to 190 symptoms for healthcare practitioner review. The final conceptual framework included 151 symptoms spanning 18 body system and functional domains. Conclusions: This study represents the first phase in the development of an MLTC-specific PROM of symptom burden. Generative AI output triangulated with content from existing PROMs and healthcare practitioner review proved a feasible approach to concept elicitation. Planned cognitive debriefing will confirm content validity of the SBQ™-MLTC for people with lived experience. In the future, the SBQ™-MLTC could support integrated, symptom-led approaches for clinical management of MLTC.

Indexed as

AIconcept elicitationcontent validitylarge language modelsmixed-methodsmulti-morbiditymultiple long-term conditionspatient-reported outcomePROPROM

Identifiers

PMID42465839
PMCPMC13373411

What Socratic holds

Textmetadata
LicenceCC BY
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Registered trials

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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.