Jefferson College of Population Health, Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
School of Medicine, Deakin University, Geelong, Victoria, Australia.
Am J Med Genet A. 2022 Aug;188(8):2293-2302. doi: 10.1002/ajmg.a.62854. Epub 2022 Jun 10.
Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co-morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co-morbidities and other adverse health issues at higher rates than those who entirely switch to an adult-care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decision-making capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.
唐氏综合征(DS)是全球最常见的染色体疾病之一,与普通人群相比,DS 患者有更多的合并症,健康状况更差。目前人们对 DS 患者如何从儿科过渡到成人护理以及这些过渡对患者的细节、障碍和困难还了解甚少。因此,我们旨在对 PubMed、Scopus 和 CINAHL 上关于 DS 患者医疗保健过渡(HCT)的文献进行范围综述。研究结果表明,继续由儿科护理提供者为成年 DS 患者提供护理的患者比完全转至成人护理团队的患者更容易出现合并症和其他不良健康问题。由于多种障碍,如低收入、有限/公共保险、性别和种族,DS 患者无法进行过渡。我们提出了潜在的过渡步骤,重点是确保早期规划、更好地沟通、协调服务、评估决策能力以及提供持续的社会和经济支持。未来的研究必须进一步确定和解决 DS 患者 HCT 面临的障碍。