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

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dc.citation.volume15
dc.contributor.authorAnelli, Catherine Gusman [UNIFESP]
dc.contributor.authorMendes Amorim, Ana Luiza [UNIFESP]
dc.contributor.authorOsaku, Fabiane Mitie [UNIFESP]
dc.contributor.authorTerreri, Maria Teresa [UNIFESP]
dc.contributor.authorLen, Claudio Arnaldo [UNIFESP]
dc.contributor.authorReiff, Andreas
dc.coverageLondon
dc.date.accessioned2020-07-13T11:53:12Z
dc.date.available2020-07-13T11:53:12Z
dc.date.issued2017
dc.description.abstractBackground: 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.en
dc.description.affiliationUniv Fed Sao Paulo, Div Rheumatol, Dept Pediat, Sao Paulo, Brazil
dc.description.affiliationUniv Southern Calif, Childrens Hosp Los Angeles, Keck Sch Med, Div Rheumatol MS 60, Los Angeles, CA USA
dc.description.affiliationUnifespUniv Fed Sao Paulo, Div Rheumatol, Dept Pediat, Sao Paulo, Brazil
dc.description.sourceWeb of Science
dc.description.sponsorshipMEC/MCTI/CAPES/CNPQ/FAPS (Brazil)
dc.description.sponsorshipConselho Nacional de Desenvolvimento Cientifico e Tecnologico
dc.description.sponsorshipIDCNPq: 303, 752/2015-7
dc.format.extent-
dc.identifierhttp://dx.doi.org/10.1186/s12969-017-0176-y
dc.identifier.citationPediatric Rheumatology. London, v. 15, p. -, 2017.
dc.identifier.doi10.1186/s12969-017-0176-y
dc.identifier.fileWOS000402338100001.pdf
dc.identifier.issn1546-0096
dc.identifier.urihttps://repositorio.unifesp.br/handle/11600/54449
dc.identifier.wosWOS:000402338100001
dc.language.isoeng
dc.publisherBiomed Central Ltd
dc.relation.ispartofPediatric Rheumatology
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectTransitionen
dc.subjectBrazilen
dc.subjectRheumatologyen
dc.subjectResearch in health servicesen
dc.titleChallenges in transitioning adolescents and young adults with rheumatologic diseases to adult Care in a Developing Country - the Brazilian experienceen
dc.typeinfo:eu-repo/semantics/article
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