FRI0705-HPR THE RELATIONSHIP BETWEEN SELF-REPORTED PAIN EXPERIENCE AND FUNCTIONALITY IN PATIENTS WITH JUVENILE SCLERODERMA
Authors: Ela Tarakci, Arzu Dag, Amra Adrovic, Kenan Barut, Mehmet Yildiz, Ozgur Kasapcopur
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background</h3> Juvenile scleroderma (JS) is a rarely seen chronic connective tissue disorder characterized by inflammation and fibrosis of the skin. Pain and functionality is a widely neglected symptom in patients with JS, even though it may be common and have a significant impact on the quality of life. Clinical trials and small treatment studies suggest that pain is significant in scleroderma, but few data speak of the frequency or presence and experience of pain and the relationship between self-reported pain and functionality. <h3>Objectives</h3> This study aimed to determine whether the presence of pain (based on physical conditions and participants' report) and self-reported pain experience in children with JS differ from same gender population controls. <h3>Methods</h3> 30 patients (26 girls, 4 boys) with JS between the ages of 6-18 years and 30 healthy controls (20 girls, 10 boys) with similar age and gender were included in our study. The follow-up form was prepared considering the relevant parameters such associo-demographic status of JS disease.Self-reported presence and experience of pain were assessed in rest, during a physical activity and after or during an exercise. Children rated their pain severity on a six-item Wong-Baker Pain Scale (WBS:0-10) from none to worst. The location, spread and character of the pain were asked (flammable, sinking, squeezing, restlessness, tingling, throbbing, tingling, electric shock etc.). Children completed their functional abilitiy status with "Childhood Health Assessment Questionnaire (CHAQ)" and "Jebson Taylor Hand Function Test (JTHFT)". <h3>Results</h3> The mean age of the JS group was 14.06 ± 3.24 years (86% female, 14% male; while the%53 localized scleroderma,%47 SSc).Compared with controls, more JS participants, who indicated pain and comprehended self-reporting scales, reported higher pain affect and intensity pain and/or discomfort with activity and with exercise (p&lt;0.05, 47% vs p&lt;0.05, 57%), but fewer JS participants reported pain at the test (p&lt;0.05, 3.3%). 40% of the patients described the character of the pain as sneezing, 7% had throbbing, 7% had tingling, 3% had flammable, and 3% had a smear. The rest of 40% population had no pain. There was a significant correlation between pain at rest and CHAQ-Total scores (r=0.576; p=0.001). There was no significant relationship between pain during activity or exercise and JTHFT and CHAQ-Total (p&gt; 0.05). <h3>Conclusion</h3> In our study, only a significant relationship was found between pain at rest and functionality. These findings indicate that pain is common in JS and that pain is significant determinants of physical functioning and social adjustment, two important components of health-related quality of life. Increased attention to effective management of pain in pediatric scleroderma will likely lead to improved functioning and quality of life. <h3>References</h3> [1] Rocha, L. F., Marangoni, R. G., Sampaio-Barros, P. D., Levy-Neto, M., Yoshinari, N. H., Bonfa, E.,. .. &amp; Kowalski, S. C. Cross-cultural adaptation and validation of the Brazilian version of the Scleroderma Health Assessment Questionnaire (SHAQ). Clinical rheumatology. 2014; 33(5):699-706. [2] Wong DL., Baker CM. Pain in children: comparison of assessment scales. Pediatr Nurs. 1988; 14(1):9-17 **The co-author Ela Tarakcı was supported to participate to EULAR 2019 by Turkish Academy of Sciences as a winner of the Young Scientists Award Programme (GEBIP) 2018. <h3>Disclosure of Interests</h3> None declared