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

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.

Prevalence and Causes of Paralysis—United States, 2013

“…This was difficult because paralysis is ill defined, and people living with paralysis are not sampled in sufficient numbers in existing surveys to accurately estimate prevalence, cause, and related health effects. 1 To assist with health promotion efforts directed at those living with paralysis, etiology of paralysis and associated health effects needed to be quantified. This report estimates that nearly 5.4 million persons live with paralysis in the United States and that the leading causes of paralysis include stroke, spinal cord injury, MS, and cerebral palsy.…”

“…The conceptual development, methodology, and validation of survey questions are described elsewhere. 1 …”

Self-reported disability according to the International Classification of Functioning, Disability and Health Low Back Pain Core Set: Test-retest agreement and reliability

“…30 Moreover, application of LBP-CS-SRC total scores in rehabilitation research as outcome measures may afford greater insights into the differential impacts of treatments on activity limitations and participation restrictions. 25 Beyond rehabilitation, pending further investigation, the LBP-CS-SRC could aid large scale disability surveillance programs 26 or even inform disability compensation decision-making.…”

A preliminary analysis of physical therapist agreement regarding the perceived impairments in cases of runners with knee pain

“…Although physical and movement-based impairments are also present in patients with knee pain, only running-specific impairments were included in this analysis to prevent heterogeneity in responses and to ensure the data could be analyzed. 'Perceived impairments' were defined as potential problems in body function or structure such as a deviation or loss that may be perceived as clinically significant to the patient as a runner (Fox, Krahn, Sinclair, and Cahill, 2015). Several perceived impairments are noted as "inappropriate" thus, the value could be either too much of the noted motion or too little and the interpretation was at the discretion of the physical therapists.…”