PATIENT AND PARENT PERCEPTIONS OF DISEASE ACTIVITY IN SYSTEMIC

Pediatric Rheumatology Online Journal → June 2003 → Systemic Onset Arthritis → Abstract #13

PATIENT AND PARENT PERCEPTIONS OF DISEASE ACTIVITY IN SYSTEMIC-ONSET JUVENILE IDIOPATHIC ARTHRITIS (SOJIA)

M. Batthish,¹ A. V. Ramanan,² R. Schneider,^1,2 C. Achonu,² B. M. Feldman.^1,2

¹Faculty of Medicine, University of Toronto, Toronto, ON, Canada; ²Division of Rheumatology, Hospital for Sick Children, Toronto, ON, Canada

BACKGROUND: SoJIA is one of the most serious chronic illnesses of childhood. At present, there is no specific tool to measure disease activity for SoJIA. AIM: Our long-term goal is to develop a disease activity measure for SoJIA using a consensus (Delphi) approach. In developing this measure we interviewed both patients and their parents so that specific items reflecting their perceptions of active disease can be included for consideration in a disease activity measure for SoJIA. METHODS: SoJIA patients followed at the Hospital for Sick Children and their parents were chosen by purposive sampling. A trained researcher interviewed them using open-ended questions to elicit measures of disease activity (defined as reversible manifestations of disease). A summarized list of measures was then generated and organized by categories to allow for item reduction. RESULTS: Fourteen patients (8 females) with a mean age of 11.8 years and their parents were interviewed. A total of 292 items were generated with an average of 11 items generated per interview. Arthralgia, ambulation difficulties, decreased energy level, fever and rash were the most common items mentioned by patients and their parents. Mood disturbances, decreased activity levels, arthritis severity and decreased school attendance were also common items identified as measures of disease activity. The resulting categories will be added to future physician surveys in the further development and validation of a disease activity measure for SoJIA. CONCLUSION: This study has allowed us to include patient and parent perspectives in the design of a disease activity measure for SoJIA.