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

ABSTRACT: 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.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.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.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.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.

SUBMITTER: Fox MH

PROVIDER: S-EPMC4608488 | biostudies-literature | 2015 Jul

REPOSITORIES: biostudies-literature

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

Fox Michael H MH Krahn Gloria L GL Sinclair Lisa B LB Cahill Anthony A

Disability and health journal 20150314 3

<h4>Background</h4>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.<h4>Objective/hypotheses</h4>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 th ...[more]

PMID: 25887622

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Project description:This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making. Autism Res 2018, 11: 463-475. © 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc.Lay summaryThe study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual.

Project description:BackgroundThe concept of participation is recognized as an important rehabilitation outcome and instruments have been developed to measure participation using the International Classification of Functioning, Disability and Health (ICF). To date, few studies have examined the content of these instruments to determine how participation has been operationalized. The purpose of this study was to compare the content of participation instruments using the ICF classification.MethodsA systematic literature search was conducted to identify instruments that assess participation according to the ICF. Instruments were considered to assess participation and were included if the domains contain content from a minimum of three ICF chapters ranging from Chapter 3 Communication to Chapter 9 Community, social and civic life in the activities and participation component. The instrument content was examined by first identifying the meaningful concepts in each question and then linking these concepts to ICF categories. The content analysis included reporting the 1) ICF chapters (domains) covered in the activities and participation component, 2) relevance of the meaningful concepts to the activities and participation component and 3) context in which the activities and participation component categories are evaluated.ResultsEight instruments were included: Impact on Participation and Autonomy, Keele Assessment of Participation, Participation Survey/Mobility, Participation Measure-Post Acute Care, Participation Objective Participation Subjective, Participation Scale (P-Scale), Rating of Perceived Participation and World Health Organization Disability Assessment Schedule II (WHODAS II). 1351 meaningful concepts were identified in the eight instruments. There are differences among the instruments regarding how participation is operationalized. All the instruments cover six to eight of the nine chapters in the activities and participation component. The P-Scale and WHODAS II have questions which do not contain any meaningful concepts related to the activities and participation component. Differences were also observed in how other ICF components (body functions, environmental factors) and health are operationalized in the instruments.ConclusionLinking the meaningful concepts in the participation instruments to the ICF classification provided an objective and comprehensive method for analyzing the content. The content analysis revealed differences in how the concept of participation is operationalized and these differences should be considered when selecting an instrument.

Project description:BackgroundShoulder pain is a common condition with prevalence estimates of 7-26% and the associated disability is multi-faceted. For functional assessments in clinic and research, a number of condition-specific and generic measures are available. With the approval of the ICF, a system is now available for the analysis of health status measures. The aims of this systematic literature review were to identify the most frequently addressed aspects of functioning in assessments of shoulder pain and provide an overview of the content of frequently used measures.MethodsMeaningful concepts of the identified measures were extracted and linked to the most precise ICF categories. Second-level categories with a relative frequency above 1% and the content of measures with at least 5 citations were reported.ResultsA set of 40?second-level ICF categories were identified in 370 single-item measures and 105 multi-item measures, of these, 28 belonged to activities and participation, 11 to body functions and structures and 1 to environmental factors. The most frequently addressed concepts were: pain; movement-related body functions and structures; sleep, hand and arm use, self-care, household tasks, work and employment, and leisure. Concepts of psycho-social functions and environmental factors were less frequently included. The content overview of commonly used condition-specific and generic measures displayed large variations in the number of included concepts. The most wide-ranging measures, the DASH and ASES were linked to 23 and 16?second-level ICF categories, respectively, whereas the Constant were linked to 7 categories and the SST and the SPADI to 6 categories each.ConclusionsThis systematic review displayed that measures used for shoulder pain included more than twice as many concepts of activities and participation than concepts of body functions and structures. Environmental factors were scarcely addressed. The huge differences in the content of the condition-specific multi-item measures demonstrates the importance of clarifying the content to select the most appropriate measure both in research and in clinical work. For clinical situations, we propose use of a wide-ranging condition-specific measure that conceptualizes assessments of shoulder pain from a bio-psycho-social perspective. Further research is needed to assess how patient-reported problems in functioning are captured in the commonly used measures.

Project description:BACKGROUND:The number of older people with unmet care and support needs is increasing substantially due to the challenges facing the formal and informal care system in the United Kingdom. Addressing these unmet needs is becoming one of the urgent public health priorities. In order to develop effective solutions to address some of these needs, it is important first to understand the care and support needs of older people. METHODS:A scoping review was conducted, using the Arksey and O'Malley original and enhanced framework, to understand the care and support needs of older people, focusing on those living at home with chronic conditions in the UK. The search was conducted using five electronic data bases, grey literature and reference list checks. The WHO International Classification of Functioning, Disability and Health (ICF) framework was used to analyse and categorise the literature findings. RESULTS:Forty studies were included in the final analysis- 32 from academic literature and 8 from grey literature. The review highlighted that older adults faced a range of physical, social and psychological challenges due to living with chronic conditions and required care and support in three main areas: 1) social activities and relationships; 2) psychological health; and 3) activities related to mobility, self-care and domestic life. The review also highlighted that many older people demonstrated a desire to cope with their illness and maintain independence, however, environmental factors interfered with these efforts including: 1) lack of professional advice on self-care strategies; 2) poor communication and coordination of services; and 3) lack of information on services such as care pathways. A gap in the knowledge was also identified about the care and support needs of two groups within the older population: 1) older workers; and 2) older carers. CONCLUSIONS:The review highlighted that older people living with chronic conditions have unmet care needs related to their physical and psychological health, social life, as well as the environment in which they live and interact. Findings of this review also emphasized the importance of developing care models and support services based around the needs of older people.

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

Publications

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

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