Impact of rheumatic autoimmune chronic long term: a challenge for the patient and health team

• Grant number: 15/18744-1
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: December 01, 2015
• End date: November 30, 2016
• Field of knowledge: Health Sciences - Medicine
• Principal Investigator: Claudio Arnaldo Len
• Grantee: Layla Sayuri Kaczorowski Sasaki
• Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil

Abstract

Autoimmune diseases are common and affect about 5% of the population. The clinical presentations are varied and recurrent and chronic character is associated with persistent clinical activity and a multisystemic long-term impact, as well as any damage caused by the disease and treatment. In about 15% of cases the onset is earlier and occurs in childhood or adolescence, but some consequences are observed over the years, with a negative impact on quality of life related to health. Therefore, global attention is required to patients beginning in the age group and goes to the geriatric care.* Justification: Despite the care of children and adolescents with rheumatic diseases to be held in some referral services in our country, there is no national studies on the transition of these patients to the rheumatology clinic for adults and on and on the impact of these Long-term diseases. Obtaining these data is important for therapeutic planning and the allocation of human and material resources. As an example, in our Pediatric Rheumatology Unit are attended monthly more than 500 patients, 15-20% of patients are at an age of transition to the adult clinic (21 years old). In addition to generating knowledge, the results of this study can be replicated to other reference centers in São Paulo and Brazil as a whole*Goals1) Measure the socio-economic, medical and emotional long-term autoimmune rheumatic diseases (JSLE JIA and JDM) of childhood onset in adolescents and adults from the Pediatric Rheumatology at UNIFESP / EPM service.2) Compare these impacts among patients who still follow the Pediatric Rheumatology service of the UNIFESP / EPM with those who have been transitioned to other services.3) Develop a transition clinic model in Pediatric Rheumatology, based on care, teaching and research, replicable for other national and international services.* Methods: Our clinic is a national reference and receives patients State of São Paulo and throughout the country. We serve about 1,300 patients a year, aged between 0 and 20, which are mailed to 21 years for the rheumatology clinic for adults. Will be recruited all patients aged at least 17 who were diagnosed with juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, juvenile dermatomyositis and systemic scleroderma and were followed for at least one year in the Ambulatory Pediatric Rheumatology Allergy, Clinical Immunology and Rheumatology, Department of Pediatrics, Federal University of São Paulo (Unifesp / EPM), with a minimum of 5 years of disease and diagnosis according to the American College of Rheumatology (ACR). They must respond to specific questionnaires about satisfaction with the transition, quality of life and assessment activity and disease damage.Patients will be divided into two groups for comparison: patients who still have medical care at the Clinic of Pediatric Rheumatology at UNIFESP / EPM (group 1) and patients who have been transitioned to other services specific to adults or lost follow-up for more than 2 years (group 2).All data will only be collected after signing the terms of consent or informed consent.* Expected Results: Our data allow a detailed knowledge of the impact of autoimmune rheumatic diseases in adolescents followed up in a reference clinic, as well as young adults who are being assisted in adult clinics or no follow-up. The results will be important for the development of assistance strategies and research in this population, which will be released in our country and the international community.