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

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

Author Anelli, Catherine Gusman Autor UNIFESP Google Scholar
Mendes Amorim, Ana Luiza Autor UNIFESP Google Scholar
Osaku, Fabiane Mitie Autor UNIFESP Google Scholar
Terreri, Maria Teresa Autor UNIFESP Google Scholar
Len, Claudio Arnaldo Autor UNIFESP Google Scholar
Reiff, Andreas Google Scholar
Abstract Background: 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. Methods: Practicing pediatric rheumatologists registered in the Brazilian Society of Rheumatology were e-surveyed with SurveyMonkey (R) 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. Results: Seventy-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. Conclusions: Our 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.
Keywords Transition
Brazil
Rheumatology
Research in health services
xmlui.dri2xhtml.METS-1.0.item-coverage London
Language English
Sponsor MEC/MCTI/CAPES/CNPQ/FAPS (Brazil)
Conselho Nacional de Desenvolvimento Cientifico e Tecnologico
Grant number CNPq: 303, 752/2015-7
Date 2017
Published in Pediatric Rheumatology. London, v. 15, p. -, 2017.
ISSN 1546-0096 (Sherpa/Romeo, impact factor)
Publisher Biomed Central Ltd
Extent -
Origin http://dx.doi.org/10.1186/s12969-017-0176-y
Access rights Open access Open Access
Type Article
Web of Science ID WOS:000402338100001
URI https://repositorio.unifesp.br/handle/11600/54449

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