Situation with medical care for children with rheumatic disease on the example of juvenile arthritis: the view of patients and their parents

The survey of parents is one of the optimal opportunities to understand the drawbacks of healthcare to children with rheumatic diseases, since these drawbacks are not reflected in patient medical records, statistical data, and the opinion of the doctor. Parents surveys provide information on the subjective understanding of the disease symptoms, duration and characteristics of the child's route from the disease onset to the diagnosis and treatment initiation, choice of primary care physician, problems on the route, disease awareness, and subjective understanding of the legal field regulating healthcare to children with rheumatic diseases. Objective. To identify possible ways to improve the access to healthcare among children with juvenile arthritis (JA) by analyzing the information from their parents on the patient portrait, patient pathway, social burden of the disease, its impact on various aspects of the life of a child and the family, and legal field regulating healthcare to children with rheumatic diseases. Patients and methods. We conducted a cross-sectional study where we surveyed 306 parents of JA patients, including 56 children with JA with systemic onset, 230 with different JA variants without systemic manifestations, and 20 with an unspecified JA. The main parameters assessed were as follows: JA patient portrait, patient pathway, social burden of JA, parental awareness about the and legal field regulating healthcare to children with rheumatic diseases. We used Fisher's exact test and Pearson's χ2-test to assess the significance of differences. All the p-values given are based on two-sided tests. Differences were considered significant at р < 0.05. Results. According to parents, the most common clinical symptoms of JA without systemic manifestations at onset were restricted movements of joints (74.3%), arthralgia (71.7%), morning stiffness (62.2%); JA patients with a systemic onset had fever (78.5%) and rash (68%). Three-quarters of respondents (regardless of the JA type) visited a pediatrician within the first month after symptom onset. Only 52% of patients were referred for consultation to a pediatric rheumatologist within a month after symptom onset. More than one-third of patients were diagnosed with JA within a month; half of the patients, after 1–6 months; and 18% of patients, after 6 months. The majority of children (88%) started to receive biologicals later than 6 months after the diagnosis; 64% of JA patients with a systemic onset and 92% of JA patients without systemic manifestations. The disease negatively affected everyday life of the child and his/her family in 91% of cases. Sixty-one percent of respondents knew about the existence of clinical guidelines; 44% of them knew about the right to have the status of a “disabled child” without subsequent re-examination before the age of 18; 39% of respondents knew about the possibility to have the status of a “disabled child” in those children whose remission depends on the constant use of biologicals and/or immunosuppressant; 17% of parents knew about the possibility to use remote monitoring tools. Conclusion. The opinion of parents is an important information about the quality of healthcare to children with rheumatic diseases. It should be considered when developing measures to optimize medical care for such children. Our data on the portrait and pathway of the patient should be used to determine the target group of specialists, whose better awareness of rheumatic diseases will reduce the time to diagnosis and treatment initiation. The opinion about the social burden of the disease and the subjective understanding of the legal field regulating healthcare to children with rheumatic diseases will provide a rationale for developing new measures of social, psychological, and legal support, including the creation of "Schools for patients with rheumatic diseases." Kew words: disease awareness, healthcare organization, patient portrait, patient pathway, legal field, social burden of the disease, juvenile arthritis