Beyond counting cases: public health impacts of national Paediatric Surveillance Units

Grenier, Danielle; Elliott, Elizabeth J; Zurynski, Yvonne; Pereira, Rob Rodrigues; Preece, M. J.; Lynn, Richard; Kries, R. von; Zimmermann, H; Dickson, Nigel; Virella, Daniel

doi:10.1136/adc.2006.097451

Cited by 31 publications

(32 citation statements)

References 46 publications

(38 reference statements)

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“…Psychiatric surveillance markedly enhanced overall case ascertainment when conducted together with paediatric surveillance. Card return and questionnaire completion rates were comparable with well established surveillance systems (Verity & Preece, 2002; Grenier et al, 2007). Although the card compliance and questionnaire response rates were high for this study, the respondent list was developed to look specifically for EOED.…”

Section: Discussionsupporting

confidence: 60%

“…An alternative strategy for studying rare disorders is active surveillance using large clinical networks, a methodology first developed by the British Paediatric Surveillance Unit (BPSU) in the 1980's (Verity & Preece, 2002; Lynn et al, 2007). Now adopted world‐wide, paediatric surveillance has enabled accurate estimates of the incidence of childhood rare conditions and influenced clinical management, service planning and public health policy internationally (Grenier et al, 2007).…”

Section: Introductionmentioning

confidence: 99%

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Ascertainment of early onset eating disorders: a pilot for developing a national child psychiatric surveillance system

Lynn¹,

Viner²,

Nicholls

2011

Child Adoles Ment Health

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Background: A Child & Adolescent Psychiatric Surveillance System was established as part of a British Paediatric Surveillance Unit study of early onset eating disorders (EOED). Method: A study of EOED presenting to paediatricians was undertaken through the BPSU over 15 months in 2005–06. Results: Monthly report cards compliance was 83%, identifying 208 EOED cases. On evaluation, 99% of psychiatrists responding supported the need for surveillance and 95% would continue to contribute. Conclusions: The findings of this pilot study suggest that a monthly surveillance of rare conditions in child and adolescent psychiatry is feasible and enhances ascertainment.

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Section: Discussionsupporting

confidence: 60%

Section: Introductionmentioning

confidence: 99%

Ascertainment of early onset eating disorders: a pilot for developing a national child psychiatric surveillance system

Lynn¹,

Viner²,

Nicholls

2011

Child Adoles Ment Health

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“…Paediatric surveillance units (PSUs), established and supported by paediatricians, are a valuable source of prospective national data on the epidemiology, management and outcomes of rare childhood conditions but struggle with underfunding 48. For most conditions studied, PSUs provide the only national data, which inform clinical and public health policy, stimulate further research and enable establishment of cohorts of patients for intervention and longitudinal studies 48…”

Section: Resultsmentioning

confidence: 99%

Rare childhood diseases: how should we respond?

Zurynski

Frith

Leonard

et al. 2008

Archives of Disease in Childhood

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124

119

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Paradoxically, rare diseases are common, collectively affecting 6-10% of the population and have a huge impact on patients and families, health services, clinicians and the wider community. Accurate data are required to inform clinical practice, government policy and health service planning. We recommend a national approach, similar to that adopted in the USA and Europe, to support research and promote advocacy and equitable access to services for children with rare diseases.

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“…All 12 infectious disease categories were covered, to varying degrees. Several systems monitored disease outcomes in multiple categories, such as the Mortality Data Collection (deaths)[22], National Minimum Data Set (NMDS) (hospitalisations)[23], the Notifiable Disease Surveillance System[24], New Zealand Paediatric Surveillance Unit (uncommon infections in children)[25,26], Notifiable Occupational Disease Surveillance System (infections acquired at work) [27], and outbreak surveillance[28]. In addition, most disease categories also had specialised surveillance systems for specific diseases, notably influenza [29-31], HIV/AIDS [32,33], sexually transmitted infections (STIs) [34], transfusion related infections [35], Creutzfeldt-Jakob disease (CJD) [24], and HAIs [36,37].…”

Section: Resultsmentioning

confidence: 99%

“…There is a legal requirement to report certain diseases (eg, the notifiable disease system[24]), while others are reported voluntarily (eg, to the New Zealand Paediatric Surveillance Unit [25,26]). Hazard surveillance involved a much wider range of reporting sources, which tended to be associated with a particular activity or product, often monitored at the industry level and only scrutinised at the national level periodically or if an outbreak occurs.…”

Section: Resultsmentioning

confidence: 99%

A surveillance sector review applied to infectious diseases at a country level

2010

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BackgroundThe new International Health Regulations (IHR) require World Health Organization (WHO) member states to assess their core capacity for surveillance. Such reviews also have the potential to identify important surveillance gaps, improve the organisation of disparate surveillance systems and to focus attention on upstream hazards, determinants and interventions.MethodsWe developed a surveillance sector review method for evaluating all of the surveillance systems and related activities across a sector, in this case those concerned with infectious diseases in New Zealand. The first stage was a systematic description of these surveillance systems using a newly developed framework and classification system. Key informant interviews were conducted to validate the available information on the systems identified.ResultsWe identified 91 surveillance systems and related activities in the 12 coherent categories of infectious diseases examined. The majority (n = 40 or 44%) of these were disease surveillance systems. They covered all categories, particularly for more severe outcomes including those resulting in death or hospitalisations. Except for some notifiable diseases and influenza, surveillance of less severe, but important infectious diseases occurring in the community was largely absent. There were 31 systems (34%) for surveillance of upstream infectious disease hazards, including risk and protective factors. This area tended to have many potential gaps and lack integration, partly because such systems were operated by a range of different agencies, often outside the health sector. There were fewer surveillance systems for determinants, including population size and characteristics (n = 9), and interventions (n = 11).ConclusionsIt was possible to create and populate a workable framework for describing all the infectious diseases surveillance systems and related activities in a single developed country and to identify potential surveillance sector gaps. This is the first stage in a review process that will lead to identification of priorities for surveillance sector development.

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Beyond counting cases: public health impacts of national Paediatric Surveillance Units

Cited by 31 publications

References 46 publications

Ascertainment of early onset eating disorders: a pilot for developing a national child psychiatric surveillance system

Ascertainment of early onset eating disorders: a pilot for developing a national child psychiatric surveillance system

Rare childhood diseases: how should we respond?

A surveillance sector review applied to infectious diseases at a country level

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