Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience
Autor(a) principal: | |
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Data de Publicação: | 2017 |
Outros Autores: | , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Institucional da UNIFESP |
Texto Completo: | https://repositorio.unifesp.br/handle/11600/54449 http://dx.doi.org/10.1186/s12969-017-0176-y |
Resumo: | 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. |
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Anelli, Catherine Gusman [UNIFESP]Mendes Amorim, Ana Luiza [UNIFESP]Osaku, Fabiane Mitie [UNIFESP]Terreri, Maria Teresa [UNIFESP]Len, Claudio Arnaldo [UNIFESP]Reiff, Andreas2020-07-13T11:53:12Z2020-07-13T11:53:12Z2017Pediatric Rheumatology. London, v. 15, p. -, 2017.1546-0096https://repositorio.unifesp.br/handle/11600/54449http://dx.doi.org/10.1186/s12969-017-0176-yWOS000402338100001.pdf10.1186/s12969-017-0176-yWOS:000402338100001Background: 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.MEC/MCTI/CAPES/CNPQ/FAPS (Brazil)Conselho Nacional de Desenvolvimento Cientifico e TecnologicoUniv Fed Sao Paulo, Div Rheumatol, Dept Pediat, Sao Paulo, BrazilUniv Southern Calif, Childrens Hosp Los Angeles, Keck Sch Med, Div Rheumatol MS 60, Los Angeles, CA USAUniv Fed Sao Paulo, Div Rheumatol, Dept Pediat, Sao Paulo, BrazilCNPq: 303, 752/2015-7Web of Science-engBiomed Central LtdPediatric RheumatologyTransitionBrazilRheumatologyResearch in health servicesChallenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experienceinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleLondon15info:eu-repo/semantics/openAccessreponame:Repositório Institucional da UNIFESPinstname:Universidade Federal de São Paulo (UNIFESP)instacron:UNIFESP11600/544492022-02-07 20:58:47.455metadata only accessoai:repositorio.unifesp.br:11600/54449Repositório InstitucionalPUBhttp://www.repositorio.unifesp.br/oai/requestopendoar:34652022-02-07T23:58:47Repositório Institucional da UNIFESP - Universidade Federal de São Paulo (UNIFESP)false |
dc.title.en.fl_str_mv |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
title |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
spellingShingle |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience Anelli, Catherine Gusman [UNIFESP] Transition Brazil Rheumatology Research in health services |
title_short |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
title_full |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
title_fullStr |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
title_full_unstemmed |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
title_sort |
Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experience |
author |
Anelli, Catherine Gusman [UNIFESP] |
author_facet |
Anelli, Catherine Gusman [UNIFESP] Mendes Amorim, Ana Luiza [UNIFESP] Osaku, Fabiane Mitie [UNIFESP] Terreri, Maria Teresa [UNIFESP] Len, Claudio Arnaldo [UNIFESP] Reiff, Andreas |
author_role |
author |
author2 |
Mendes Amorim, Ana Luiza [UNIFESP] Osaku, Fabiane Mitie [UNIFESP] Terreri, Maria Teresa [UNIFESP] Len, Claudio Arnaldo [UNIFESP] Reiff, Andreas |
author2_role |
author author author author author |
dc.contributor.author.fl_str_mv |
Anelli, Catherine Gusman [UNIFESP] Mendes Amorim, Ana Luiza [UNIFESP] Osaku, Fabiane Mitie [UNIFESP] Terreri, Maria Teresa [UNIFESP] Len, Claudio Arnaldo [UNIFESP] Reiff, Andreas |
dc.subject.eng.fl_str_mv |
Transition Brazil Rheumatology Research in health services |
topic |
Transition Brazil Rheumatology Research in health services |
description |
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. |
publishDate |
2017 |
dc.date.issued.fl_str_mv |
2017 |
dc.date.accessioned.fl_str_mv |
2020-07-13T11:53:12Z |
dc.date.available.fl_str_mv |
2020-07-13T11:53:12Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.citation.fl_str_mv |
Pediatric Rheumatology. London, v. 15, p. -, 2017. |
dc.identifier.uri.fl_str_mv |
https://repositorio.unifesp.br/handle/11600/54449 http://dx.doi.org/10.1186/s12969-017-0176-y |
dc.identifier.issn.none.fl_str_mv |
1546-0096 |
dc.identifier.file.none.fl_str_mv |
WOS000402338100001.pdf |
dc.identifier.doi.none.fl_str_mv |
10.1186/s12969-017-0176-y |
dc.identifier.wos.none.fl_str_mv |
WOS:000402338100001 |
identifier_str_mv |
Pediatric Rheumatology. London, v. 15, p. -, 2017. 1546-0096 WOS000402338100001.pdf 10.1186/s12969-017-0176-y WOS:000402338100001 |
url |
https://repositorio.unifesp.br/handle/11600/54449 http://dx.doi.org/10.1186/s12969-017-0176-y |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.ispartof.none.fl_str_mv |
Pediatric Rheumatology |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
- |
dc.coverage.none.fl_str_mv |
London |
dc.publisher.none.fl_str_mv |
Biomed Central Ltd |
publisher.none.fl_str_mv |
Biomed Central Ltd |
dc.source.none.fl_str_mv |
reponame:Repositório Institucional da UNIFESP instname:Universidade Federal de São Paulo (UNIFESP) instacron:UNIFESP |
instname_str |
Universidade Federal de São Paulo (UNIFESP) |
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UNIFESP |
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UNIFESP |
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Repositório Institucional da UNIFESP |
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Repositório Institucional da UNIFESP |
repository.name.fl_str_mv |
Repositório Institucional da UNIFESP - Universidade Federal de São Paulo (UNIFESP) |
repository.mail.fl_str_mv |
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1802764153761300480 |