Institute of Child Health, University College London Research Department of Epidemiology and Public Health, London, UK.
BPSU, Royal College of Paedaitrics, London, UK.
Arch Dis Child. 2020 Jan;105(1):62-68. doi: 10.1136/archdischild-2019-317401. Epub 2019 Jul 3.
The British Paediatric Surveillance Unit (BPSU) conducts surveillance of rare paediatric conditions using active, or prospective, case finding. The reliability of estimates of incidence, which is the primary outcome of public health importance, depends on ascertainment being as near complete as possible. This paper reviews evidence of the completeness of ascertainment in recent surveillance studies run through the BPSU. Ascertainment varied between 49% and 94% depending on the study. These are upper estimates. This was the basis of a discussion on barriers and facilitators of ascertainment which we have separated into factors related to the condition, factors related to the study methods, factors related to the study team and factors related to the surveillance system infrastructure. This leads to a series of recommendations to ensure continuing high levels of ascertainment in active surveillance studies.
英国儿科监测单位（BPSU）采用主动或前瞻性病例发现方法，对罕见儿科疾病进行监测。发病率估计的可靠性，即公共卫生的主要结果，取决于尽可能完整的确定。本文回顾了 BPSU 最近进行的监测研究中确定的完整性证据。根据研究的不同，确定率在 49%至 94%之间。这些都是上限估计。这是关于确定障碍和促进因素的讨论的基础，我们将其分为与疾病相关的因素、与研究方法相关的因素、与研究团队相关的因素和与监测系统基础设施相关的因素。这就导致了一系列确保主动监测研究中继续保持高确定率的建议。
