Strickler A S, Palma J, Charris R, Candia T, Grez M, González B, King A, Rivera V
Escuela de Medicina, Departamento de Pediatría, Universidad San Sebastián, Puerto Montt, Chile,
Escuela de Medicina, Departamento de Pediatría, Universidad San Sebastián, Puerto Montt, Chile.
Rev Chil Pediatr. 2018 Feb;89(1):59-66. doi: 10.4067/S0370-41062018000100059.
Children and adolescents with rheumatologic diseases require specialized and comprehensive care, but pediatric rheumatologists and immunologists are concentrated in hospitals with specific, high-cost and modern technology. Considering that some patients with juvenile idiopathic arthritis (JIA) live in rural, remote and limited accessibility areas, the use of Telemedicine (TM) can optimize diag nosis, follow-up and prognosis.
Reporting 10 years of experience of a mixed care model: face-to-face and distance, using basic TM; the institutional impact, advantages, disadvantages and acceptance informed by parents and patients.
Exploratory, descriptive, and re trospective study with qualitative component. After the authorization of a scientific-ethics committee of the Reloncaví Health Service and the application of informed consent, a review of medical records was carried out and a qualitative survey was applied to parents and children over 14 years of age with JIA, seen between 2005-2015 in the pediatric ambulatory rheumatology polyclinic of Puerto Montt Hospital.
The were 27/35 participating patients with JIA attended by a trained pediatrician and assisted by distance (1,000 km) by an immunologist. The 8/35 patients did not answer by choice or change of address. The 70% of parents and patients accepted the model of care and 4% would pre fer sporadic care only by specialists for diagnosis and follow-up. The number of patients transferred annually decreased from 10 to 1. The advantages of the care model outweighed the disadvantages perceived by parents and JIA patients.
The use of TM tools in JIA decreased transfers, improved follow-up and were considered advantageous by patients and their parents.
患有风湿性疾病的儿童和青少年需要专门的综合护理，但儿科风湿病学家和免疫学家集中在拥有特定、高成本和现代技术的医院。考虑到一些青少年特发性关节炎（JIA）患者生活在农村、偏远且交通不便的地区，远程医疗（TM）的使用可以优化诊断、随访和预后。
报告一种混合护理模式（面对面和远程，使用基本远程医疗）的10年经验；父母和患者所反映的机构影响、优点、缺点及接受度。
具有定性成分的探索性、描述性和回顾性研究。经雷隆卡维卫生服务科学伦理委员会批准并应用知情同意后，对医疗记录进行了审查，并对2005年至2015年期间在蒙特港医院儿科门诊风湿病多学科诊所就诊的14岁以上JIA患儿及其父母进行了定性调查。
35名参与研究的JIA患者中有27名由一名经过培训的儿科医生诊治，并由一名免疫学家通过远程方式（距离1000公里）提供协助。35名患者中有8名因选择不回应或地址变更而未作答。70%的父母和患者接受了护理模式，4%的人仅希望由专家进行零星的诊断和随访护理。每年转诊的患者数量从10人减少到1人。护理模式的优点超过了父母和JIA患者所感知到的缺点。
在JIA中使用远程医疗工具减少了转诊，改善了随访，患者及其父母认为其具有优势。
