Anelli Catherine Gusman, Amorim Ana Luiza Mendes, Osaku Fabiane Mitie, Terreri Maria Teresa, Len Claudio Arnaldo, Reiff Andreas
Division of Rheumatology, Department of Pediatrics, Federal University of São Paulo, São Paulo, Brazil.
Division of Rheumatology MS 60, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, USA.
Pediatr Rheumatol Online J. 2017 May 30;15(1):47. doi: 10.1186/s12969-017-0176-y.
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.
Practicing 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.
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.
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.
针对发展中国家的过渡指南和建议有限，针对患有慢性疾病的年轻患者的最佳过渡实践尚未得到充分研究。本研究评估了巴西从儿科到成人风湿病护理的过渡实践。
使用SurveyMonkey®对巴西风湿病学会注册的执业儿科风湿病学家进行电子调查，问卷采用Chira等人先前用于评估美国和加拿大儿童关节炎与风湿病研究联盟（CARRA）的儿科风湿病学家过渡实践的问卷。对问卷进行了修改，以更好地解决与巴西医疗保健系统相关的具体问题。
112名儿科风湿病学家中有76名（68%）做出了回应。只有13%的受访者表示他们有完善的过渡计划，只有14%的人对当前的过渡过程感到满意。80%的人没有使用任何特定工具来评估过渡准备情况。虽然43%的受访者认为18岁是理想的过渡年龄，但只有三分之一的人在该年龄有效地为患者进行了过渡，48%的人则在之后进行了过渡。受访者提到的成功过渡的主要障碍包括对患者的情感依恋（95%）、过渡实践培训不足（87%）、缺乏用于过渡准备和过程的专门时间（80%）、儿科全科医生缺乏协助（77%）以及缺乏可用的成人专科医生（75%）。67%的受访者表示他们的项目需要更多工具/资源来促进过渡，59%的人认为制定具体指南将有助于规范和推动过渡过程。
我们的研究表明，巴西患者在过渡方面面临的挑战与美国和加拿大儿科风湿病学家报告的挑战相似。然而，当前影响巴西医疗保健系统的财政经济压力可能迫使医生将过渡等非紧急护理置于次要地位。全面了解发展中国家青少年特有的过渡问题，并不仅向患者而且向医疗保健提供者宣传无缝过渡过程的重要性，将有助于制定过渡指南，并确保儿科专科患者获得更好的治疗效果。
