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. 2015 Jul;8(3):457-63.
doi: 10.1016/j.dhjo.2015.03.002. Epub 2015 Mar 14.

Using the international classification of functioning, disability and health to expand understanding of paralysis in the United States through improved surveillance

Michael H Fox  1 , Gloria L Krahn  2 , Lisa B Sinclair  3 , Anthony Cahill  4
Affiliations

Using the international classification of functioning, disability and health to expand understanding of paralysis in the United States through improved surveillance

Michael H Fox et al. Disabil Health J. 2015 Jul.

Abstract

Background: Surveillance on paralysis prevalence has been conceptually and methodologically challenging. Numerous methods have been used to approximate population-level paralysis prevalence estimates leading to widely divergent prevalence estimates.

Objective/hypotheses: To describe three phases in use of the International Classification of Functioning, Disability and Health (ICF) as a framework and planning tool for defining paralysis and developing public health surveillance of this condition.

Methods: Description of the surveillance methodology covers four steps: an assessment of prior data collection efforts that included a review of existing surveys, registries and other data collection efforts designed to capture both case definitions in use and prevalence of paralysis; use of a consensus conference of experts to develop a case definition of paralysis based on the ICF rather than medical diagnostic criteria; explanation of use of the ICF framework for domains of interest to develop, cognitively test, validate and administer a brief self-report questionnaire for telephone administration on a population; and development and administration of a Paralysis Prevalence and Health Disparities Survey that used content mapping to back code items from existing national surveys to operationalize key domains.

Results: ICF coding led to a national population-based survey of paralysis that produced accurate estimates of prevalence and identification of factors related to the health of people in the U.S. living with paralysis.

Conclusions: The ICF can be a useful tool for developing valid and reliable surveillance strategies targeting subgroups of individuals with functional disabilities such as people with paralysis and others.

Keywords: Functional definition of disability; ICF; Paralysis; Surveillance.

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Figures

Fig. 1
Fig. 1
Flow diagrams for sample selection for the 2008 & 2013 paralysis surveys: N = 103,806 (total).
Fig. 2
Fig. 2
Integrating the International Classification of Functioning, Disability and Health (ICF) into National Paralysis Surveillance.
See this image and copyright information in PMC

References

    1. Fox MH, Rowland JL, Froehlich-Grobe K, Vernberg D, White GW, Haskett L. Determining paralysis prevalence in the United States. Disabil Health J. 2008;1(3):172–179. - PubMed
    1. United States. Congress. House. Committee on Energy and Commerce. (Report U.S. Government Printing Office).Christopher and Dana Reeve Paralysis Act: Report (To Accompany HR 1727) (Including Cost Estimate of the Congressional Budget Office) 2007;110(378) http://www.gpo.gov/fdsys/pkg/CRPT-110hrpt937/html/CRPT-110hrpt937.htm. Accessed 09.07.13.
    1. Christopher and Dana Reeve Paralysis Act. Disability and Health Program; 2013. (Centers for Disease Control and Prevention: 10). Available at: http://www.cdc.gov/ncbddd/disabilityandhealth/programs.html. Accessed 09.07.13.
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