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JIA patients, parents identified issues in pediatric rheumatology care, service delivery
Patients with juvenile idiopathic arthritis and their parents identified and proposed five major areas of concern regarding pediatric rheumatology care and service delivery in a recent study.
Thirteen adolescents with juvenile idiopathic arthritis and 37 parents (29 women) in New South Wales, Australia, participated in focus groups or interviews by telephone and in-person from August to November 2011. Researchers identified changes to the pediatric rheumatology care model as a result of the process.
Five main themes identified by the participants were:
- Optimizing service efficiency, including promoting general awareness of the disease, minimizing delays in diagnosis and treatment, providing continuity of care, coordinating holistic and integrated care, ensuring access to health care providers with JIA experience, extending pharmacy services and providing programs for regional outreach
- Providing transitional care, including building trust and rapport with the rheumatologist and ensuring comprehensive transfer of patient history
- Providing psychosocial support, including social and financial aid, mental health services, vocational guidance and peer support
- Meeting informational needs, including the adverse effects of medications, nutritional guidance, managing pain, medication administration and how to obtain medical equipment
- Providing school-based advocacy and support in promoting acceptance, along with academic assistance, including environmental modifications and offering alternative activities
“We have demonstrated that consumers can articulate a range of issues relevant to pediatric rheumatology care and service delivery and suggest how they can be incorporated in the development of service delivery models,” the researchers concluded. “Health care professionals and organizations should endeavor to involve consumers in health service development. This can help to ensure that services are accessible and responsive to the needs and concerns of patients and their families.”
Disclosure: The researchers report no relevant financial disclosures.