THU0605 Facilitating patient centred care: the development of illustrated multidimensional patient reported outcome measure for children with juvenile idiopathic arthritis
Authors: Y. El Miedany, H. Lotfy, N. El Aroussy, D. Mekkawy, S.I. Nasef, W. Hassan, G. El Deriny, Y. Farag, M. Eissa, S. Almedany, M. El Gaafary
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> The advances in paediatric rheumatology management have mandated a drastic change in the way children with juvenile arthritis are assessed and monitored. As a consequence, there has been a call for new outcome measures that reflect a more holistic approach to day to day standard management. Such an emphasis reflects contemporary views about the relation between mind and body, and acknowledges the critical link between physical and psychological health as well as adherence to therapy amongst the children living with inflammatory arthritis. <h3>Objectives</h3> To assess validity; reliability and responsiveness to change of an illustrated child/parent Multidimensional Patient Reported Outcome Measures questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis. <h3>Methods</h3> 106 children with juvenile inflammatory arthritis were included in this work in a multicentre study. The questionnaire was developed by integrating information obtained from children living with JIA as well as their parents. The questionnaire included 5 main categories which are patient-centred: Health related quality of life: functional ability (children health assessment questionnaire) and quality of life (10-items reflecting psychological, social, school and behavioural issues as well as the patient’s own perception). 2. Disease activity measure: pain intensity, the child’s overall well-being, measure of fatigue and morning stiffness using (0–10 numerical visual analogue scale), 3. self-reported joint tenderness and swelling. 4. Current medication, side effects as well as adherence to therapy (2 questions using 0–10 numerical visual analogue scale); 4. Comorbidities as well as 5. Patient motivation. All the items were supported by illustrations to explain the question and make it easier to understand. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27. <h3>Results</h3> The questionnaire was reliable as demonstrated by a high-standardised alpha (0.890–0.978). The questionnaire items correlated significantly (p&lt;0.01) with clinical parameters of disease activity. The patient reported tender joints correlated significantly with the physician’s scores (0.842). Changes in functional disability, quality of life as well as the motivation score showed significant variation (p&lt;0.01) with diseases activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6). <h3>Conclusions</h3> Integrating patient reported outcome measures into standard clinical practice is feasible and applicable. This version of illustrated multidimensional questionnaire was found to be valid and reliable. It provides informative quantitative measure for the disease activity core set data, and in the meantime, facilitates assessing the children’s health related quality of life measure, adherence to therapy, comorbidities as well as motivation on individual basis. <h3>Disclosure of Interest</h3> None declared