Case ascertainment in active paediatric surveillance systems: a report from the British Paediatric Surveillance Unit Ascertainment Group. Issue 1 (3rd July 2019)

• Record Type: Journal Article
• Authors: Lynn, Richard M; Reading, Richard
• Other Names: author non-byline.; Adams Natalie author non-byline.; Avis Jacob author non-byline.; Barker Lisa author non-byline.; Bedford Helen author non-byline.; Eke Helen author non-byline.; Foot Barney author non-byline.; Francis Kate author non-byline.; Hunter Lyndsey author non-byline.; Irwin Adam author non-byline.; Janssens Astrid author non-byline.; Knowles Rachel author non-byline.; Ladhani Shamez author non-byline.; Michie Colin author non-byline.; Oeser Clarissa author non-byline.; Peters Helen author non-byline.; Philbin Marcia author non-byline.; Powell Alison author non-byline.; Samad Lamiya author non-byline.; Simms Ian author non-byline.; Simpson Melanie author non-byline.; Stevens Sara author non-byline.; Tookey Pat author non-byline.; Verity Chris author non-byline.; Water naude Johann Te author non-byline.; Winstone Anne-marie author non-byline.; Wood Rachael author non-byline.; Surveillance unit ascertainment groupnatalie adams British Paediatric author non-byline.; Avis Jacob author non-byline.; Barker Lisa author non-byline.; Bedford Helen author non-byline.; Eke Helen author non-byline.; Foot Barney author non-byline.; Francis Kate author non-byline.; Hunter Lyndsey author non-byline.; Irwin Adam author non-byline.; Janssens Astrid author non-byline.; Knowles Rachel author non-byline.; Ladhani Shamez author non-byline.; Michie Colin author non-byline.; Oeser Clarissa author non-byline.; Peters Helen author non-byline.; Philbin Marcia author non-byline.; Powell Alison author non-byline.; Samad Lamiya author non-byline.; Simms Ian author non-byline.; Simpson Melanie author non-byline.; Stevens Sara author non-byline.; Tookey Pat author non-byline.; Verity Chris author non-byline.; Water naude Johann Te author non-byline.; Winstone Anne-marie author non-byline.; Wood Rachael author non-byline.;
• Is Part Of: Archives of disease in childhood. Volume 105:Issue 1(2020)
• Page Start: 62
• Page End: 68
• Publication Date: 2019-07-03
• Subjects: general paediatrics -- epidemiology -- BPSU -- disease surveillance -- case ascertainment; Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2019-317401
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : 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.