Consumer perspectives on pediatric rheumatology care and service delivery: a qualitative study.

Objectives: This study aimed to elicit parental and adolescent perspectives on pediatric rheumatology care and service delivery and to describe the impact of this process on a proposed model of care addressing pediatric rheumatology service delivery.

Methods: Adolescents with juvenile idiopathic arthritis (JIA) and caregivers in New South Wales, Australia, participated in focus groups or semistructured interviews conducted from August to November 2011. Transcripts were coded and thematically analyzed. Changes to the model of care as a result of this process were identified.

Results: Thirty-seven parents and 13 adolescents participated. Five main themes were identified including (1) optimize service efficiency (promoting awareness about JIA, minimizing delays in diagnosis and treatment, continuity of care, holistic and integrated care, access to health care providers with JIA expertise, extending pharmacy services, regional outreach programs); (2) transitional care (trust and rapport with the adult rheumatologist, comprehensive information transfer of patient history); (3) psychosocial support (social and financial aid, mental health services, vocational guidance, peer support); (4) informational needs (medicine adverse effects, nutritional guidance, pain management, administering medications, obtaining medical equipment); and (5) school-based support and advocacy (to promote acceptance, provide academic assistance, facilitate environmental modifications, offer alternative activities). The model of care was extended to include consumer-focused concerns.

Conclusions: A well-coordinated network of services, timely and accurate information about the illness, treatment and support services, adequate pharmacy support, and school-based advocacy are proposed to be needed to ensure pediatric rheumatology services that are accessible and responsive to the needs of patients and their families.