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Published on: March 1, 2024
Diagnosis journey for children with juvenile idiopathic arthritis: a qualitative study
Aurelie Chausset1,2, Caroline Freychet3, Anne Lohse4
1CRECHE Unit INSERM-CIC 1405, Department of Pediatrics, CHU Clermont-Ferrand, Clermont-Ferrand, France achausset@chu-clermontferrand.fr.
Insights
Understanding the diagnostic journey for juvenile idiopathic arthritis (JIA) is crucial. This study reveals parents
Area of Science:
- Pediatric Rheumatology
- Qualitative Health Research
- Patient Experience
Background:
- Juvenile idiopathic arthritis (JIA) diagnosis and referral pathways can be complex for families.
- Understanding the patient and parent journey is essential for improving care.
- Previous research has not fully captured the lived experiences of families navigating JIA diagnosis.
Purpose of the Study:
- To explore the diagnostic journey and referral pathways for children with JIA from symptom onset to initial paediatric rheumatology assessments.
- To understand the experiences of children diagnosed with JIA and their parents.
- To identify factors influencing the diagnostic experience and its impact.
Main Methods:
- Qualitative study employing semistructured interviews.
- Interpretative phenomenological analysis (IPA) used for data analysis.
- 19 families with children diagnosed with JIA (4-24 months prior) participated, including 22 parents and 12 children over 11 years old, across 4 paediatric rheumatology centres.
Main Results:
- Families often initially trivialized symptoms, progressing to a growing sense of urgency.
- A perception gap existed between families' concerns and initial medical interventions.
- Parents frequently initiated action due to a perceived lack of physician guidance.
- Various care pathway elements significantly influenced the diagnostic experience and its outcomes.
Conclusions:
- The psychosocial impact of delayed JIA diagnosis, particularly for adolescents, is significant.
- Incorporating patient and parent experiences into PCP training and guidelines is recommended.
- Developing integrated online resources with medical information and family testimonials can empower families and improve communication.
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.
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