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.
Highlights
Transition guidelines and recommendations for developing countries are limited and best transition practices in young patients with chronic medical conditions have been poorly examined
We merged 2 questions about “selection of the adult provider” into one and added 2 questions: “How long has the respondent’s rheumatology program existed?” and “Who is responsible for transition?” Certain questions were adapted for Brazilian providers (e.g. “location of practice”, “utilization of transition readiness tools in general instead of asking for specific tools geared towards the US or Canadian population”)
A 23 questionnaire was sent via e-mail to all certified pediatric rheumatologists registered by the Brazilian Society of Rheumatology, which constitutes the majority of all certified PRs in Brazil
Summary
Transition 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. Several studies have reported that transition from pediatric to adult health care is often flawed due to limited medical staff training, the lack of a point person responsible for the transition, financial difficulties, as well as anxiety on the part of pediatricians, adolescents and their parents related to the process. Appropriate infrastructure for such specialized health care remains rare and transition practices have not been systematically analyzed [9]. This leads to high dropout rates, loss in follow-up and poor outcomes [6]. This problem is not unique to pediatric rheumatology but is a concern across all pediatric subspecialties [8, 9]
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