Green Lane Paediatric and Congenital Cardiac Services, Starship Children's Health, Te Whatu Ora - Health New Zealand, Te Toka Tumai Auckland, Auckland, New Zealand.
Te Kupenga Hauora Māori, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.
BMJ Open. 2022 Dec 30;12(12):e066232. doi: 10.1136/bmjopen-2022-066232.
To create a cohort with high specificity for moderate and severe rheumatic heart disease (RHD) in New Zealand, not reliant on International Classification of Diseases discharge coding. To describe the demography and cardiac profile of this historical and contemporary cohort.
Retrospective identification of moderate or severe RHD with disease onset by 2019. Case identification from the following data sources: cardiac surgical databases, RHD case series, percutaneous balloon valvuloplasty databases, echocardiography databases, regional rheumatic fever registers and RHD clinic lists. The setting for this study was a high-income country with continued incidence of acute rheumatic fever (ARF).
A Registry cohort of 4959 patients was established. The initial presentation was RHD without recognised prior ARF in 41%, and ARF in 59%. Ethnicity breakdown: Māori 38%, Pacific 33.5%, European 21.9%, other 6.7%. Ethnic disparities have changed significantly over time. Prior to 1960, RHD cases were 64.3% European, 25.3% Māori and 6.7% Pacific. However, in contrast, from 2010 to 2019, RHD cases were 10.7% European, 37.4% Māori and 47.2% Pacific.Follow-up showed 32% had changed region of residence within New Zealand from their initial presentation. At least one cardiac intervention (cardiac surgery, transcatheter balloon valvuloplasty) was undertaken in 64% of the cohort at a mean age of 40 years. 19.8% of the cohort had multiple cardiac interventions. At latest follow-up, 26.9% of the cohort died. Of those alive, the mean follow-up is 20.5+19.4 years. Māori and Pacific led governance groups have been established to provide data governance and oversight for the registry.
Detailed mortality and morbidity of the registry cases will be defined by linkage to New Zealand national health data collections. The contemporary cohort of the registry will be available for future studies to improve clinical management and outcomes for the 3450 individuals living with chronic RHD.
创建一个新西兰高特异性的中重度风湿性心脏病（RHD）队列，该队列不依赖于国际疾病分类出院编码。描述该历史和当代队列的人口统计学和心脏特征。
回顾性确定 2019 年之前发病的中重度 RHD。通过以下数据源识别病例：心脏外科数据库、RHD 病例系列、经皮球囊瓣膜成形术数据库、超声心动图数据库、区域风湿热登记处和 RHD 诊所名单。本研究的背景是一个高收入国家，急性风湿热（ARF）的发病率仍在持续。
建立了一个注册队列，其中包含 4959 名患者。最初表现为 RHD，无已知的既往 ARF 占 41%，有 ARF 占 59%。种族细分：毛利人 38%，太平洋岛民 33.5%，欧洲人 21.9%，其他 6.7%。种族差异随时间发生了显著变化。1960 年前，RHD 患者中 64.3%为欧洲人，25.3%为毛利人，6.7%为太平洋岛民。然而，相比之下，从 2010 年到 2019 年，RHD 患者中 10.7%为欧洲人，37.4%为毛利人，47.2%为太平洋岛民。随访显示，32%的患者在首次就诊后改变了新西兰的居住地。在该队列中，至少有 64%的患者在平均年龄 40 岁时接受了心脏介入治疗（心脏手术、经导管球囊瓣膜成形术）。19.8%的患者接受了多次心脏介入治疗。在最新随访时，该队列中有 26.9%的患者死亡。在存活的患者中，平均随访时间为 20.5+19.4 年。毛利人和太平洋岛民领导的治理小组已经成立，为该注册中心提供数据治理和监督。
通过与新西兰国家健康数据收集的链接，详细定义注册病例的死亡率和发病率。该注册中心的当代队列将可供未来的研究使用，以改善 3450 名慢性 RHD 患者的临床管理和结局。
