Adolescent disease self-management differs from adult-focused models due to the role of family systems, diverse therapies, and a need for frequent disease monitoring.
Patient engagement and patient activation have a role in promoting positive self-management skills and young person autonomy in a clinical context. Healthcare providers play an important role by enabling shared decision-making. Involving adolescents and young adults (AYA) in treatment decisions can improve engagement in their care and help them to make decisions consistent with their values.
Young person, caregiver, and healthcare provider focus groups highlight the need for self-management programs to include disease-related knowledge, physical and emotional coping skills training, and communication skills training. Rheumatology clinic-specific programs can be used to address these concerns though access to clinic-based programs can be difficult due to geographical, financial, and literacy barriers. Currently available programs focus on remote delivery of peer support, disease-related knowledge, and coping skills. Digital strategies have potential to deliver remote education on self-management therapies, prepare AYAs with rheumatic musculoskeletal disease for the future, and potentially improve health-related quality of life.
Pediatric self-management Rheumatic musculoskeletal disease Juvenile arthritis Self-management skills Digital health interventions Patient activation Patient engagement Shared decision-making
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Thank you to Cleo Davies Chalmers (Research Student, The Hospital for Sick Children, Toronto, Ontario) for assisting with the literature search for this chapter and drafting the abstract.
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