Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience

Abstract

BackgroundTransition guidelines and recommendations for developing countries are limited and best transition practices in young patients with chronic medical conditions have been poorly examined. This study evaluates transition practices from pediatric to adult rheumatology care in Brazil.MethodsPracticing pediatric rheumatologists registered in the Brazilian Society of Rheumatology were e-surveyed with SurveyMonkey® using the Chira et al. questionnaire that had been used previously to evaluate transition practices of pediatric rheumatologists from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) in the USA and Canada. The questionnaire was modified to better address specific issues pertaining to the Brazilian health care system.ResultsSeventy-six of 112 (68%) pediatric rheumatologists responded. Only 13% of the respondents reported that they had a well-established transition program and only 14% were satisfied with their current transition process. Eighty percent did not use any specific tools to assess transition readiness. While 43% of respondents considered 18 as the ideal transition age, only a third effectively transitioned their patients at that age while 48% did later. Major hurdles for a successful transition cited by the respondents included emotional attachment to the patients (95%) insufficient training in transition practice (87%), lack of devoted time for transition preparation and process (80%), lack of assistance by pediatric generalists, (77%), and lack of available adult subspecialists (75%). Sixty-seven percent of respondents stated that their program would need more tools/resources to facilitate transition and 59% believed that the development of specific guidelines would be useful to standardize and help with the transition process.ConclusionsOur study demonstrates that the identified challenges pertaining to transition in Brazilian patients are similar to those reported by pediatric rheumatologists in the United States and Canada. However, the current financial economic pressures affecting Brazil’s health care system may force physicians to deprioritize non emergent care such as transition. A comprehensive understanding of transition issues specific to youth in developing countries and educating not only patients but also health care providers about the importance of a seamless transition process will support the development of transition guidelines and ensure better outcomes of pediatric subspecialty patients.

Epidemiology and management practices for childhood-onset systemic lupus erythematosus patients: a survey in Latin America

“…Well-established transition programs are still a challenge in LA clinical practice. A recent survey to assess transition practices in Brazil showed that only 14% of the pediatric rheumatologists were satisfied with their current transition process [39].…”

Transição dos cuidados de pacientes com doenças crônicas da pediatria para a medicina de adultos: Práticas de um hospital terciário no Brasil

“…No país, a discussão sobre transição de cuidados da pediatria para a medicina de adultos ainda é incipiente, com raros trabalhos de especialidades pediátricas, que ainda não caracterizam a utilização de protocolos institucionais. 24,25 Este não é um problema apenas dos países de língua portuguesa, porém. A discussão nos Estados Unidos, por exemplo, já avança há 20 anos aproximadamente, com o primeiro consenso sobre transição (Academia Americana de Pediatria/Academia Americana de Médicos de Família/Colégio Americano de Médicos/Sociedade Americana de Medicina Interna) datado de 2002.…”

Reduction in the utilization of prednisone or methotrexate in Canadian claims data following initiation of etanercept in pediatric patients with juvenile idiopathic arthritis

“…Some of the pediatric patients included in our study were approaching adulthood. The transfer between pediatric and adult care for patients with rheumatic disease can be complex and has been shown to lead to an increase in active disease in 30% of patients [49–51]. The importance of uninterrupted care has led the American College of Rheumatology to develop a tool kit for healthcare professionals aimed at facilitating transition of patients through this potentially difficult period [52].…”