ADOLESCENTS WITH JUVENILE IDIOPATHIC ARTHRITIS: WHAT DO THEY KNOW ABOUT THEIR CONDITION?

Background: A key element of transitional care in adolescents with chronic disorders is to make them knowledgeable about their disease and its management.Healthcare professionals should identify existing gaps in the level of knowledge and implement systematic interventions to improve patients' understanding. Objectives: The aim of this study is to investigate what adolescents with juvenile idiopathic arthritis (JIA) know about their rheumatic disease,its treatment and the implications on their physical activities. Methods: This cross-sectional, descriptive study is part of a larger project on transitional care in adolescents with JIA (http://www.kuleuven.be/switch2/).We included 32 adolescents (8m/24f) with a median age of 16 (Q1=15.0;Q3=17.0) years.Patients could be included if they were treated for JIA in our center; aged 14–18 years;and Dutch speaking. The modified Patient Knowledge Questionnaire (PKQ) was used to evaluate the level of knowledge in adolescents with JIA.This instrument consists of 16 multiple choice questions, and is designed for self-administration.Content validity of this modified version of the instrument was evaluated by calculating a content validity index on item level (I-CVI) and on summary score level (S-CVI/Ave).The I-CVI is the proportion of items that received a rating by the experts of being relevant.The S-CVI/Ave is the average of the I-CVI scores of individual items.The S-CVI/Ave of the modified PKQ was 0.99.The I-CVI was 0.88 or higher for all items.Knowing that the general accepted cut-off is 0.78 or higher for I-CVI and 0.90 or higher for S-CVI,content validity of the modified PKQ is excellent.Since this method does not adjust for chance agreement, an additional measurement for content validity that adjusts for chance was calculated:the modified kappa (k*).For two items,a kappa score of 0.88 was found and for fourteen items a kappa score of 1.00 was found.Given the fact that the general cut-off for excellent agreement is k*≥0.75, the agreement between the experts on the relevance of the items is excellent (1;2). Results: We found that no patient had good knowledge (>80% correct answers) on any of the items. Moderate knowledge,as defined by 50%>80% correct answers,was found for activities with low impact on their joints (66%),how to plan their activities in case of fatigue (63%) and physical activities (59%).Poor knowledge (<50% correct answers) was observed in 13 items, with less than 20% of the adolescents having knowledge about pain medication (19%),the symptoms of JIA (13%), side effects of NSAID's (9%), treatment of JIA (6%) and blood tests (3%). Conclusions: Juvenile arthritis-related knowledge in adolescents is poor.Disease understanding is crucial when adolescents become responsible for their disease management.A structured transition program is recommended,so that health professionals can assist the youngsters individually to reduce the gaps in their knowledge.Validity on test content of the modified PKQ has been demonstrated. References: 1. Cicchetti DV, Sparrow SA. Developing criteria for establishing interrater reliability of specific items: applications to assessment of adaptive behavior. Am J Ment Defic 1981 Sep;86(2):127-37. 2. Fleiss LS, Levin B, Paik MC, Statistical methods r rates and proportions (3rd edn).New York: Wiley; 2003. Disclosure of Interest: None DeclaredCitation: Annals of the Rheumatic Diseases, volume 70, supplement 3, year 2011, page 756Session: Nursing (Poster Presentations )