Juvenil idiyopatik artrit tanılı, biyolojik tedavi alan adolesan hastalar ve bakım veren ebeveynlerinde sağlık okuryazarlığının tedavi uyumu üzerine etkisi

Introduction: Juvenile idiopathic arthritis, often manifesting as peripheral arthritis due to an increased inflammatory response in the immune system where endogenous or exogenous antigens play a role in the pathogenesis, is the most commonly encountered rheumatic disease during childhood and adolescence. However, it's also one of the significant causes of short-term and long-term consequences. Aim: Pediatric rheumatic diseases have a comprehensive impact on a child's life, affecting physical, social, emotional, educational, and economic aspects. Studies have shown that children with these diseases frequently experience issues such as acute and chronic pain, limited mobility, morning stiffness, psychological problems, growth retardation, eye disorders, restricted leisure activities, reduced participation in events, and school absenteeism. Considering these factors, this study aims to investigate the influence of understanding the disease and its treatment, specifically related to Juvenile Idiopathic Arthritis – the most prevalent rheumatological condition in childhood – on treatment adherence, given its long-term and multidisciplinary treatment regimens. Patients and Methods: A survey was conducted between June 2023 and October 2023 among patients aged 13-18 diagnosed with Juvenile Idiopathic Arthritis who were receiving biological treatment at DEUTF Pediatric Rheumatology Clinic. The study involved administering the Health Literacy Scale for School-Age Children, the eHealth Literacy Scale, the Modified Morisky Adherence Scale to the patients, and the Turkish Health Literacy Scale-32 to the caregivers. Socio-demographic characteristics, disease-related information, and treatment details were collected through a case report form. Findings: It has been determined that 55.7% of juvenile idiopathic arthritis diagnosed patients receiving biological treatment between the ages of 13-18 are girls and 44.3% are boys. In terms of medication adherence, it was found that in 75.4% of patients, the mother, in 11.5% the father, in 13.1% both parents were responsible, and 34.4% of the medication adherence was managed by parents with primary education, 16.4% with secondary education, 27.9% with high school education, and 21.3% with university education. Regarding the biological treatments of patients with active arthritis in 54.1% and inactive disease in 24.6% during the last visit, it was determined that so far 93.4% have used anti-TNF, 41% anti-IL 6, 6.6% anti-IL 1, and 1.6% another biological agent. It was reported that 6.6% of children experienced adverse effects to the biological agent they are currently using, with 3.3% being allergies, 32.8% experiencing adverse effects to a previously used agent, and 27.9% experiencing gastrointestinal side effects, 3.3% allergies, and 1.6% another side effect. Regarding health literacy, according to the Health Literacy Scale for School-Age Children, 8.2% of children have low health literacy, 57.4% have moderate health literacy, and 34.4% have high health literacy; according to the Turkey Health Literacy Scale, 13.1% of parents have inadequate health literacy, 27.9% have problematic-limited health literacy, 29.5% have sufficient health literacy, and 29.5% have excellent health literacy. In terms of internet usage related to their illnesses, when we consider the health literacy of children according to the E-Health Literacy Scale, the average score they receive is 28.43 ± 6.18. When looking at patients' treatment adherence, according to the modified Morisky scale, it was found that 14.8% of children have low motivation and 85.2% have high motivation levels. It was determined that 13.1% of children have low knowledge and 86.9% have high knowledge levels, and the average scores they received from the Motivation Level sub-dimension of Children's Motivation Level were determined to be 2.29 ± 0.68 in those informed about the medications used and 1.40 ± 0.89 in those not informed about the medications used. Conclusion: Based on the data obtained in our study, it has been concluded that parental health literacy, parental education level, whether the parent responsible for medication adherence is the mother or father, informing the family about medications, child health literacy, child e-health literacy, and the presence of active arthritis in the last visit are associated with treatment adherence. Taking all of these into consideration, it is believed that modifiable factors have been highlighted to improve treatment adherence in Juvenile Idiopathic Arthritis, the most common rheumatologic disease in childhood. With adjustments made in this regard, it is anticipated that more favorable outcomes will be achieved in the treatment of the disease. Keywords: Juvenile Idiopathic Arthritis, Biological treatment, health literacy