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Technology, media and information in pediatric rheumatology: a vision for the future

Grant number: 16/23591-2
Support Opportunities:Scholarships in Brazil - Scientific Initiation
Effective date (Start): February 01, 2017
Effective date (End): January 31, 2018
Field of knowledge:Health Sciences - Medicine - Maternal and Child Health
Principal Investigator:Maria Teresa de Sande e Lemos Ramos Ascensão Terreri
Grantee:Vinícius Lopes Braga
Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil


Rheumatic diseases have commonly a chronic character, which affects treatment adherence. In this context, the relationship between physicians and patients becomes more important for the effectiveness of the treatment. The satisfaction of the patient and the way they get information are measures of the health team's performance. Determining the degree of satisfaction is complicated, since it is a multifactorial measure whose measurement is not always reliable. At the same time, hospitals are more and more attentive to patients' satisfaction to improve their treatment adhesion outcomes as for the financial concern of maintaining their clients. When physicians don't satisfy the demand for information, patients search in lay literature for ways to clarify their doubts - and do not always receive quality answers. OBJECTIVES: To characterize the degree of knowledge of patients and caregivers about their illnesses and the way they get information, correlated with the degree of confidence and satisfaction of patients and caregivers of the health team and other sources of information; Evaluate the degree of use of a website developed for WEB and a YouTube channel (, by the same patients and caregivers and define the themes that patients most need information. METHODS: First, we will create an online source of information about rheumatic diseases in the pediatric range and short videos, about 3 minutes about different diseases and training modalities. Afterwards, a random drawing will be carried out among the 600 patients seen monthly in the Pediatric Rheumatology outpatient clinic. The inclusion criteria are: patient and caregiver are literate; Patient has an already confirmed diagnosis of juvenile idiopathic arthritis, juvenile dermatomyositis, juvenile systemic lupus erythematosus, rheumatic fever, scleroderma and idiopathic musculoskeletal pain and the patient must be in attendance and have attended at least one consultation from August 2016 to June 2017. In a third step, caregivers and patients over 12 years will answer a questionnaire on the use of media, sources and media, which will be answered independently. Caregivers will also respond to a satisfaction questionnaire already validated in the literature. Patients who answered the questionnaires will be instructed to access the website. In the fifth step the patients answered questionnaire about the site. Lastly, the data collected will be analyzed statistically. EXPECTED RESULTS: Evaluate the reliability of information' sources and stimulate new sources of adequate information, which may ultimately improve adherence to treatment and follow-up of patients. We aim to improve the adherence of our patients and that they understand the importance of follow-up. We hope that our work will have a positive impact, not only locally, but also inspire other professionals who care for patients with chronic diseases, such as rheumatic diseases. (AU)

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