Evidence map›Paper›PMID 39558411›Full record

Observational studyPediatric rheumatology online journal2024

The patient's voice: a cross-sectional study of physical health and disability in juvenile idiopathic arthritis.

Sofie Mikalsen Arneng, Isabelle Pignatel Jenssen, Anette Lundestad, Lena Cetrelli, Oskar Angenete, Ellen Nordal, Karin B Tylleskär, Pål Richard Romundstad, Marite Rygg

Registry-linked trialAbstract readMulticenter StudyObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Pediatric rheumatology online journal, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03904459 (The Norwegian JIA Study - Temporo-mandibular Involvement, Oral Health, Uveitis, Bone Health and Quality of Life in Children With Juvenile Idiopathic Arthritis), which is not on this 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.

NCT03904459 unknown statusnot on this map

The Norwegian JIA Study - Temporo-mandibular Involvement, Oral Health, Uveitis, Bone Health and Quality of Life in Children With Juvenile Idiopathic Arthritis (JIA). A Large Multicentre Study

TypeobservationalSponsorHaukeland University HospitalRan2015 to 2020Enrolled452ConditionsArthritis, JuvenileArmsno intervention
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

9 authors.

Sofie Mikalsen Arneng *Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences (IKOM), Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Isabelle Pignatel Jenssen *Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences (IKOM), Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Anette LundestadDepartment of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences (IKOM), Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Lena CetrelliDepartment of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences (IKOM), Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Oskar AngeneteDepartment of Radiology and Nuclear Medicine, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
Ellen NordalDepartment of Clinical Medicine, The Arctic University of Norway (UiT), Tromsø, Norway.
Karin B TylleskärChild and Youth Clinic, Haukeland University Hospital, Bergen, Norway.
Pål Richard RomundstadDepartment of Public Health and Nursing, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Marite RyggDepartment of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences (IKOM), Norwegian University of Science and Technology (NTNU), Trondheim, Norway. marite.rygg@ntnu.no.ORCID http://orcid.org/0000-0001-5190-151X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundWith increasing focus on patient-reported outcome measures (PROMs) in chronic rheumatic diseases, we aimed to evaluate the self-reported physical and psychosocial health in children with juvenile idiopathic arthritis (JIA) compared to matched population-based controls. Furthermore, we aimed to study the association of patient- and physician-reported outcome measures in JIA with patient-reported physical disability.

methodsWe used data from a Norwegian JIA cohort study (NorJIA), including clinical characteristics and outcome measures in participants with JIA and sex- and age-matched population-based controls. Self-reported physical and psychosocial health were assessed using the generic Child Health Questionnaire (CHQ). Comparisons between children with JIA and controls were performed by test of proportions for categorical variables and t-test for continuous variables. To evaluate the association of patient- and physician-reported outcome measures with patient-reported physical disability, assessed with the Child Health Assessment Questionnaire (CHAQ) in children with JIA, we used logistic regression to estimate adjusted odds ratio (OR) with 95% confidence interval (CI).

resultsIn total, 221 participants with JIA (59.3% females, median age 12.7 years) and 207 controls with available data were included. In the JIA group, 24.3% scored below the norm for physical health (CHQ PhS < 40) and 8.7% scored below the norm for psychosocial health (CHQ PsS < 40). The corresponding numbers for the control group were 0.5% and 1.9%, respectively. In the JIA group, 57.9% reported physical disability (CHAQ > 0). Several patient-reported outcome measures, such as poor physical health (CHQ PhS < 40), disease-related pain, and the patient's global assessment of disease impact on wellbeing, were strongly associated with self-reported physical disability (CHAQ > 0), adjusted OR 19.0 (95% CI 5.6, 64.1), 14.1 (95% CI 6.8, 29.2), and 14.0 (95% CI 6.2, 31.6), respectively. Associations were also found for active disease according to Wallace (adjusted OR 36.3, 95% CI 10.3, 128.1), and physician-reported global assessment of disease activity (adjusted OR 6.2, 95% CI 3.1, 12.6).

conclusionsThe strong association between patient- and physician-reported outcome measures and patient-reported physical disability strengthens the importance of including the patient's voice in a comprehensive evaluation of patient outcome in JIA.

trial registrationClinicalTrials.gov (No: NCT03904459).

Indexed as

Arthritis, JuvenileDisability EvaluationHealth StatusPatient Reported Outcome MeasuresAdolescentChildCross-Sectional StudiesFemaleHumansMaleNorwayQuality of LifeSelf ReportCross-sectional studyJuvenile idiopathic arthritisPatient-reported outcome measuresPhysical disabilityPhysical healthPROMPsychosocial healthQuality of lifeSelf-reported

Identifiers

PMID39558411
PMCPMC11572323

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Registered trials

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.