Ab1051 transition Care in a New Pediatric Rheumatology Center in Brazil: Caring for Adolescence Beyond Rheumatism

Abstract

BackgroundTransition care is the planned transfer of adolescents with chronic health conditions from children-centered to adult-oriented health systems. Its challenges include gaps in continuity of care, poor adherence, delays in adult services attendance, differences between pediatric and adult centers, difficulties in autonomy over care and unstable medical conditions. EULAR/PRES recently published recommendations, standards and quality indicators on transitional care for young people with rheumatic diseases, which serve as a guide for transitional outpatient clinics. In Brazil, few centers focus on transition from pediatric rheumatology. The Pediatric Rheumatology Unit of Hospital Geral de Fortaleza is a reference in North and Northeast of the country, intending to be pioneer in transitional medicine in region.ObjectivesTo evaluate the adolescents and their families’ perception regarding follow-up and autonomy in health care, as well as to identify the main risks inherent to this age group.MethodsA longitudinal and descriptive study was carried out through interviews, questionnaires and medical records analyzes. Adolescents between 15 and 18 years old, regularly followed, who had at least three planned visits/year were included. Patients with cognitive impairment or without definite diagnosis were excluded. Epidemiological and clinical data were collected; self-management and health care utilization skills were evaluated by Transitional Readiness Assessment Questionnaire (TRAQ), a self-administered questionnaire.ResultsEighty two patients were recruited into the transitional service (61 female [74.4%]). Patients’ ages ranged from 15.0 to 18.7 years (median 16.9). Regarding religion, 41 patients (54.7%) were Catholic and 27 were Protestant (36%). Concerning to ethnicity, most of them declared themselves brown (61%) or white (22%). Fifty-nine adolescents (72%) considered themselves able to take care of their own follow-up, whereas 39 relatives (50%) considered the patient capable of doing so. The most frequent diseases were juvenile idiopathic arthritis (31.7%) and systemic lupus erythematosus (29.3%), of which 37 (45.1%) were in remission. Median disease duration and follow-up were 48.5 (5 - 180) and 34.5 (1 - 175) months, respectively. The median TRAQ value was 3.27 (1.61 - 4.55). There were 191 transitional visits (median 2.0 visits/patient). Fifty three patients had 2 or more visits, out of which 42 (79.2%) had at least one risk identified. The most prevalent risks were: overweight or obesity (31.7%), sedentarism (26.4%), anxiety (22.6%), changes in family structure (22.6%), school problems (20.8%), depression (18.9%), suicidal ideation/self-mutilation (18.9%), low self-esteem (15.1%). Risks related to psychiatric diseases were identified in 23 patients (43.4%).ConclusionThis is one of the first studies on transition care in Brazil focused on risks identification in adolescence. Transition care allows improvement survival and quality of life due to advances in preventive medicine and treatment of chronic rheu...