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Original research
Diagnosis journey for children with juvenile idiopathic arthritis: a qualitative study
  1. Aurelie Chausset1,2,
  2. Caroline Freychet3,
  3. Anne Lohse4,
  4. Alexandre Belot5,6,
  5. Etienne Merlin1,
  6. Stephane Echaubard1,
  7. Anne-Marie Schott2,
  8. Jonathan Lachal7,8,9
  1. 1CRECHE Unit INSERM-CIC 1405, Department of Pediatrics, CHU Clermont-Ferrand, Clermont-Ferrand, France
  2. 2Research on Healthcare Performance (RESHAPE), INSERM U1290, Claude Bernard Lyon 1 University, Lyon, France
  3. 3Department of Pediatric Rheumatology, Necker-Enfants Malades Hospital, Paris, France
  4. 4Department of Rheumatology, Competence center FAI2R, Franche-Comte Hospital, Belfort, France
  5. 5Pediatric Nephrology and Rheumatology, HFME, Hospices Civils Lyon, Bron, France
  6. 6National Referee Center RAISE & INSERM U1111, Lyon University, Lyon, France
  7. 7University of Clermont Auvergne, Clermont-Ferrand, France
  8. 8UVSQ, Inserm, CESP, Team DevPsy, Paris-Saclay University, Villejuif, France
  9. 9Service de Psychiatrie de l’Enfant et de l’Adolescent, CHU Clermont-Ferrand, Clermont-Ferrand, France
  1. Correspondence to Aurelie Chausset; achausset{at}chu-clermontferrand.fr

Abstract

Objective The objective is to explore the journey to diagnosis and referral pathway from the onset of symptoms to the initial assessments at paediatric rheumatology (PR) centres, based on the experience of children with juvenile idiopathic arthritis (JIA) and their parents.

Design We conducted a qualitative study with semistructured interviews. Our qualitative and phenomenological procedure applied interpretative phenomenological analysis.

Participants 19 families of children diagnosed with JIA 4–24 months before the study began (22 parents, 12 children>11 years), across 4 PR centres.

Main outcome measures The results highlight the contrasting feelings of children and their parents on the referral pathway and interactions with primary care physicians (PCPs).

Results Four superordinate themes emerged: (1) the journey undertaken by families from initially trivialising the first symptoms to a growing sense of urgency, (2) the perception gap between the families’ growing disquiet and first medical interventions, (3) the lack of guidance from physicians prompting parents to initiate action and (4) the various elements of the care pathway that influenced the way the diagnosis was experienced and its impact.

Conclusion The psychosocial consequences of delayed diagnosis in JIA should not be underestimated, especially for adolescents. The views and experiences of children and their parents on the diagnostic journey should be implemented in training programmes and guidelines for PCPs. The development of online supports, integrating the latest medical knowledge with testimonials from families about their experiences, with a common language for physicians and the general population, can facilitate communication and empower families to navigate the healthcare system.

Trial registration number NCT05696340.Cite Now

  • Paediatrics
  • Qualitative research
  • Rheumatology

Data availability statement

Data are available on reasonable request. The data that support the findings of this study are available on reasonable request from the corresponding author (achausset@chu-clermontferrand.fr). The data are not publicly available due to privacy or ethical restrictions.

https://doi.org/10.1136/archdischild-2024-327426

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    Data availability statement

    Data are available on reasonable request. The data that support the findings of this study are available on reasonable request from the corresponding author (achausset@chu-clermontferrand.fr). The data are not publicly available due to privacy or ethical restrictions.

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    Footnotes

    • Contributors AC designed the study, collected and analysed the data and drafted the manuscript. CF participated in the design of the study and reviewed and revised the manuscript. AL, AB, EM and SE supervised the data collection and revised the manuscript. JL and A-MS participated in the design of the study, analysed the data, made a substantial cultural contribution and reviewed and revised the manuscript. All the authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work. AC is the guarantor and accepts full responsibility for the work and study conduct.

    • Funding The funder of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. None of the authors have any other sources of funding to declare.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.