Evidence map›Paper›PMID 40205508›Full record

ArticleBMC rheumatology2025

Involving young people in research investigating comorbidity associated with childhood-onset rheumatic disease: perspectives of a series of focus groups.

Sab Siddiq, Jenny Sammy Ainsworth, Clare E Pain, Eve M D Smith, Sizheng Steven Zhao, David M Hughes, Liza J McCann

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC rheumatology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Review
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

7 authors.

Sab SiddiqDepartment of Health Data Science, Institute of Population Health, University of Liverpool, Waterhouse Building, Block F, 1-5 Brownlow Street, Liverpool, L69 3GL, UK.
Jenny Sammy AinsworthInstitute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
Clare E PainDepartment of Paediatric Rheumatology, Institute in the Park, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
Eve M D SmithDepartment of Women and Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
Sizheng Steven ZhaoCentre for Musculoskeletal Research, Faculty of Biology, Medicine and Health, School of Biological Sciences, Division of Musculoskeletal & Dermatological Sciences, University of Manchester, Oxford Road, Manchester, M13 9PL, UK.
David M HughesDepartment of Health Data Science, Institute of Population Health, University of Liverpool, Waterhouse Building, Block F, 1-5 Brownlow Street, Liverpool, L69 3GL, UK. dmhughes@liverpool.ac.uk.
Liza J McCannDepartment of Paediatric Rheumatology, Institute in the Park, Alder Hey Children's NHS Foundation Trust, Liverpool, UK. liza.mccann@alderhey.nhs.uk.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundChildhood-onset rheumatic diseases, such as juvenile idiopathic arthritis, juvenile-onset lupus and juvenile dermatomyositis, appear to be associated with an increased risk of comorbidities in adulthood compared to the general population. For the first stage of a research project evaluating this topic, we wanted to capture views from young people with juvenile-onset rheumatic disease to ensure that further work was relevant to their lived experience and priorities. This study aimed to determine (i) which comorbidities young people identify as important, (ii) how they access information about their disease, including comorbidity risk, whether (iii) they would like to hear about the risk of comorbidities whilst they are under paediatric care, and (iv) would be motivated to make lifestyle choices to decrease the risk of potential comorbidities.

methodsA topic guide based on the proposed study aims was developed, and PowerPoint slides were prepared to facilitate three focus group discussions to gain insights from young people. Focus groups were conducted via video platform, and the views of young people were assimilated using notetaking and an online interactive polling tool.

resultsA total of 18 young people between 10 and 27 years of age participated in the focus groups. Mental health (including depression and anxiety) was described as important comorbidity by 17/18 (94%), followed by obesity or being overweight by 9/18 (50%), heart disease by 7/18 (39%) and stroke by 5/18 (28%) of participants. Young people reported searching United Kingdom National Health Service websites, charity resources, and Google for information on their disease and associated comorbidities. They stated that they would be willing to change their lifestyle to reduce the risk of comorbidities if information were given to them sensitively with clear practical steps for reducing risk.

conclusionThree groups of young people identified risk of mental health issues, obesity, and cardiovascular morbidities as particularly important to them. They reported searching online platforms related to their disease and increasingly accessed online resources as they transitioned from paediatric to adult care. Participants thought it would be helpful to provide information on young people's disease and associated comorbidity in a motivational and sensitive way. CLINICAL TRIAL NUMBER: Not applicable.

Indexed as

Childhood-onsetComorbidityFocus groupsJuvenile dermatomyositisJuvenile idiopathic arthritis – Juvenile-onset lupusPatient and public involvement

Identifiers

PMID40205508
PMCPMC11980279

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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 OpenQuestion graph.