Cerebral palsy registries

Cans, Christine; Surman, Geraldine; McManus, Vicki; Coghlan, David; Hensey, Owen; Johnson, Ann

doi:10.1016/j.spen.2004.01.004

Cited by 57 publications

(40 citation statements)

References 48 publications

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“…However, they are associated with higher operational costs and an inherent delay in data generation compared with large preexisting health administrative databases, such as physician billing claims or hospital discharge abstracts. 6 Health administrative databases are commonly used in health services research and surveillance. Databases created for administrative purposes are largely conceptualized and implemented to keep track of patients and facilitate reim-bursement mechanisms.…”

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confidence: 99%

“…Databases created for administrative purposes are largely conceptualized and implemented to keep track of patients and facilitate reim-bursement mechanisms. 6 These databases are not without their limitations, including potential inaccuracy in diagnostic code entry that may reflect biases in recall, multiple entries from varying sources, a lack of clear, universally accepted case definitions and "diagnostic undershadowing," wherein only 1 diagnosis is entered for a child with multiple comorbidities. Such databases do have potential advantages related to a large sampling frame (population), lower costs associated with a lack of direct additional patient contact and assessment for case ascertainment, and the ability to obtain records over a longitudinal time frame from multiple sources.…”

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confidence: 99%

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Accuracy of administrative claims data for cerebral palsy diagnosis: a retrospective cohort study

Oskoui

Dorais

et al. 2017

CMAJ Open

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Background: Cerebral palsy is the most common cause of childhood physical disability, with multiple associated comorbidities. Administrative claims data provide population-level prevalence estimates for cerebral palsy surveillance; however, their diagnostic accuracy has never been validated in Quebec. This study aimed to assess the accuracy of administrative claims data for the diagnosis of cerebral palsy. Methods:We conducted a retrospective cohort study of children with cerebral palsy born between 1999 and 2002 within 6 health administrative regions of Quebec. Provincial cerebral palsy registry data (reference standard) and administrative physician claims were linked. We explored differences between true-positive and false-negative cases using subgroup sensitivity analysis.Results: A total of 301 children were identified with confirmed cerebral palsy from the provincial registry, for an estimated prevalence of 1.8 (95% confidence interval [CI] 1.6-2.1) per 1000 children 5 years of age. The sensitivity and specificity of administrative claims data for cerebral palsy were 65.5% (95% CI 59.8%-70.8%) and 99.9% (95% CI 99.9%-99.9%), respectively, yielding a prevalence of 2.0 (95% CI 1.9-2.3) per 1000 children 5 years of age. The positive and negative predictive values were 58.8% (95% CI 53.3%-64.1%) and 99.9% (95% CI 99.9%-99.9%), respectively. The κ value was 0.62 (95% CI 0.57-0.67). Administrative claims data were more sensitive for children from rural regions, born preterm, with spastic quadriparesis and with higher levels of motor impairment.Interpretation: Administrative claims data do not capture the full spectrum of children with cerebral palsy. This suggests the need for a more sensitive case definition and caution when using such data without validation. AbstractResearch Research CMAJ OPENCMAJ OPEN, 5(3) E571 bursement mechanisms. 6 These databases are not without their limitations, including potential inaccuracy in diagnostic code entry that may reflect biases in recall, multiple entries from varying sources, a lack of clear, universally accepted case definitions and "diagnostic undershadowing," wherein only 1 diagnosis is entered for a child with multiple comorbidities. Such databases do have potential advantages related to a large sampling frame (population), lower costs associated with a lack of direct additional patient contact and assessment for case ascertainment, and the ability to obtain records over a longitudinal time frame from multiple sources. This convenience has been translated into a preference for using such administrative databases for surveillance and health outcomes research. Indeed, validated case definitions have been developed and applied to a number of conditions, such as asthma, diabetes and chronic obstructive pulmonary disease, to identify cohorts of affected people. 7-9The validity of diagnostic codes for cerebral palsy used in administrative databases has not yet been established. As data from health administrative databases can potentially influence the formulation of hea...

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confidence: 99%

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Accuracy of administrative claims data for cerebral palsy diagnosis: a retrospective cohort study

Oskoui

Dorais

et al. 2017

CMAJ Open

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“…Despite the value of cerebral palsy registers [11], South Africa lacks the resources, as well as central service provision structure, to establish any formal registration. An example of a creative attempt to account for the prevalence of children with disabilities in rural Kwa-Zulu-Natal was the project undertaken by Couper [12], who reported the prevalence of cerebral palsy to be 10/1000 children under the age of 10 years.…”

Section: The Incidence Of Cerebral Palsy In South Africamentioning

confidence: 99%

‘I am what I am because of who we all are’: International perspectives on rehabilitation: South Africa

Levin

2006

Pediatric Rehabilitation

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This article provides an overview of some of the important factors that impinge on people with cerebral palsy and their families, on medical and rehabilitation personnel, and on systems of healthcare and education in South Africa. Information is provided with regard to the national contextual variables that influence intervention in the country. The incidence of cerebral palsy is related to some of the more prominent aetiological variables including poverty, malaria, HIV/Aids and premature birth. Health care systems available for children with cerebral palsy are discussed, including the role of traditional healers. Access to education, training and care of children with cerebral palsy is described, including a brief history of specialized education in South Africa. An overview of the personnel, approaches and work contexts involved in rehabilitation highlights the unique nature of intervention in South Africa. The article concludes with recommendations for interventionists with reference to lessons that can be learned in terms of adapting skills and knowledge to local needs, in order to work successfully with children with cerebral palsy and to develop the resilience of their families. In addition, it is suggested that the definition of cerebral palsy needs to reflect the context in which the person lives.

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“…5 Population-based registries with complete case acquisition provide a way of capturing a disorder, free of the inherent biases of ascertainment associated with consecutive series and convenience samples. 6 Case definition must be clear and consistent with case ascertainment comprehensive from multiple sources to assure as near-complete capture as possible. Geographic limits to the population-based registry are a necessity that crosses institutional (eg, hospital, rehabilitation centre, and university) boundaries.…”

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confidence: 99%