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Validation of a self-report and proxy-report questionnaire about complementary and alternative medicine for children and adolescents with juvenile idiopathic arthritis

Principal Investigator: Jennifer Stinson, RN, PhD, The Hospital for Sick Children, Toronto, ON, Canada

Investigators: Dr. Jennifer Stinson (PI), Dr. Karine Toupin-April, Dr. David Moher, Dr. Heather Boon, Dr. Peter Tugwell, Dr. Ciaran Duffy
Collaborators: Dr. Lynn Spiegel, Dr. Martin Descarreaux, Dr. Sunita Vohra

Juvenile Idiopathic Arthritis (JIA) is one of the most common childhood chronic illnesses and can negatively impact all aspects of quality of life. Parents may seek complementary and alternative medicine (CAM), especially if they are not satisfied with conventional care. Studies have shown that CAM use is common in children with JIA, making it important to evaluate families’ perceptions of CAM in research and clinical practice. While families of a child with JIA and their health care providers should discuss CAM, there is no standardized manner of evaluating its use and questionnaires assessing CAM use have not been thoroughly validated.

To address this gap, our research group will develop and validate a questionnaire assessing CAM use which could be completed by children with JIA as well as their parents. This questionnaire will enable health care practitioners and researchers to evaluate clinically relevant behaviors and perceptions of families concerning CAM.

This new CAM questionnaire is being developed in a sequential phased approach. In Phase 1, a systematic review (SR) of measurement properties of CAM questionnaires has been conducted. Results showed that none of the 96 identified questionnaires showed appropriate measurement properties. In Phase 2, a Delphi survey and a consensus conference were used to develop consensus amongst key stakeholders in pediatrics, rheumatology and CAM on the child self-report and parent proxy-report questionnaires. Domains and items to be included in the CAM questionnaire were identified and the research team drafted the child and parent versions of the questionnaire. In Phase 3, the face and content validity of both versions will be assessed by ten pediatric rheumatology health care professionals and ten JIA patients and their parents/caregivers. In Phase 4, a descriptive study will determine the reliability as well as construct and criterion validity of the new questionnaires in a sample of 85 JIA patients and their parents/caregivers as well as 43 CAM providers consulted by recruited families. Construct validity will verify if responses to the new questionnaire are strongly associated with other constructs which should be related to CAM use according to the scientific literature (e.g. parental CAM use, children’s disease severity and health-related quality of life). Criterion validity will ensure that the CAM questionnaire is correlated with a gold standard, which is the opinion of patients’ CAM providers for participants who received treatments in the presence of their provider (e.g. massage, acupuncture and chiropractic). For participants who used treatments prescribed by a CAM provider but that were not followed in their presence (e.g. dietary and herbal supplements), participants will be asked to complete a daily diary which will record use and perceptions of CAM for a period of two weeks. At the end of the two weeks, children and their parents/caregivers will be asked to complete the CAM questionnaire either at the hospital or at their home (and mailed back to the research centre) in order to establish its test-retest reliability.