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Patients' association programs for adolescents and young adults: The JAP study
C Beaufils1, P Jacquin2, A Dumas3
1Department of pediatric rheumatology, hôpital Femme-Mère-Enfant, hospices civils de Lyon, Claude-Bernard university Lyon 1, university of Lyon, 69677 Lyon, France; Plateforme Pass'Age, hôptial Femme-Mère-Enfant, hospices civils de Lyon, 69677 Lyon, France.
Summary
Patient associations offer programs to aid adolescents and young adults (AYAs) with chronic conditions transitioning to adult care. These peer-led initiatives, often camps and workshops, are perceived as successful and transferable to clinics.
Area of Science:
- Healthcare Transition
- Adolescent and Young Adult (AYA) Health
- Chronic Condition Management
Background:
- Innovative care clinics are emerging in France to support healthcare transitions for adolescents with chronic conditions.
- Patient associations have developed specific programs for AYAs, but these are not widely known among healthcare professionals.
Purpose of the Study:
- To describe existing programs offered by patient associations for AYAs with chronic conditions.
- To evaluate the implementation quality and transferability of these programs into transition clinics.
Main Methods:
- Semistructured interviews were conducted with representatives from patient associations.
- Quantitative and qualitative data were collected and analyzed using descriptive statistics and thematic analysis.
Main Results:
- Out of 55 surveyed associations, 19 had programs; interviews were held with 16.
- Programs primarily consisted of camps and workshops, with peer involvement enhancing educational and hobby discussions.
- Fourteen of 16 programs were perceived as successful, improving AYA quality of life, and 12 were considered transferable to transition clinics.
Conclusions:
- Programs should be uniquely tailored and customized for AYAs.
- Complementarity with existing patient association programs is crucial.
- Viability depends on peer involvement, evaluation, a common goal, and leveraging transition clinic resources.
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