Dataset Information

The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures.

ABSTRACT:

Introduction

The International Classification of Functioning, Disability, and Health (ICF), developed by the World Health Organization, is a classification framework that focuses on the health and functioning of people with disabilities. As part of an ICF Core Set development, four studies need to be conducted, one of which is a systematic review. This study presents part 1 of the systematic review that aims to describe the outcome measures identified in the literature related to functioning in individuals with deafblindness.

Evidence acquisition

The research team screened articles from eight scientific databases, three journals, and Google Scholar (March 2011 to September 2022). Articles were included if they studied individuals with deafblindness aged 18 and older. Studies that examined genetics or laboratory experiments involving animals were excluded. Data were extracted into a logbook with key descriptors such as study location and design, age of study population, and instruments/outcome measures used, which were further categorized into one of the following types: 1) standardized; 2) patient-reported measures, standardized (PT-S); 3) patient-reported measures, not standardized (PT-not S); 4) health professional, reported measures, standardized (HP-S); 5) Technical measures; 6) other measures (parent-reported standardized and laboratory measures).

Evidence synthesis

The review included 147 studies, of which most were conducted in Europe (47.6%) and North America (27.9%). Of the 314 identified outcome measures, 57 were Standardized, 59 were Patient Reported-Standardized (PT-S), 178 were patient reported non-standardized (PT-Not S) variables, 11 were health professional reported, standardized, five were technical, and four were classified as other measures.

Conclusions

Most instruments measured functioning in daily activities and the mental health of individuals with deafblindness. Three deafblind-specific instruments were identified in this study, highlighting the need for more deafblind-specific instruments to be developed and utilized in research.

SUBMITTER: Paramasivam A

PROVIDER: S-EPMC10664768 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

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Publications

The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures.

Paramasivam Abinethaa A Jaiswal Atul A Budhiraja Shreya S Holzhey Peter P Santhakumaran Praveena P Ogedengbe Tosin T Martin Jana J DAS Supriya S Côté Samuel S Hassid Romina R James Tyler G TG Kennedy Beth B Tang Diana D Tran Yvvone Y Colson-Osborne Heather H Li Chen Che Muriel M Minhas Renu R Granberg Sarah S Wittich Walter W

European journal of physical and rehabilitation medicine 20230717 5

<h4>Introduction</h4>The International Classification of Functioning, Disability, and Health (ICF), developed by the World Health Organization, is a classification framework that focuses on the health and functioning of people with disabilities. As part of an ICF Core Set development, four studies need to be conducted, one of which is a systematic review. This study presents part 1 of the systematic review that aims to describe the outcome measures identified in the literature related to functio ...[more]

PMID: 37458491

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Project description:IntroductionDeafblindness, a health condition with varying combinations of hearing and vision impairment, affects functioning and social participation. In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) to examine human health and functioning. To use the ICF in clinical practice, smaller categories of ICF codes, referred to as Core Sets, were developed for specific health conditions. However, no ICF Core Set exists for deafblindness. As part of an ICF Core Set development, this paper examines the existing literature from an ICF perspective and links relevant data to the ICF categories.Evidence acquisitionThe systematic review followed the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA). Articles were selected from eight scientific databases, three journals, and Google Scholar. The research team linked outcome measures and qualitative studies to ICF codes using ICF linking rules. For each measure/qualitative study's final code list, they included each code only once after eliminating any duplicates. Subsequently, a frequency analysis was conducted, and ICF categories identified in at least five studies were included in the candidate categories list.Evidence synthesis147 articles met the eligibility criteria. Most studies were from Europe (N.=70) and North America (N.=41). 316 categories were identified in at least five studies that belong to one of four ICF components. This includes 112 categories in the body function component, 3 categories in body structure, 163 in activities and participation, and 38 in environmental factors. Additionally, 21 personal factors relating to demographics were identified. The most frequent category was listening (category d115) at 82.31%, followed by range of emotions (category b1522) at 78.91%, hearing function (category b230) at 68.03%, and assistive products and technology for communication (category e1251) at 63.27%.ConclusionsAs the second part of the first four studies in developing ICF Core Sets for deafblindness, this review described the ICF categories relevant to the functioning of individuals with deafblindness. These categories inform the development of the Core Sets on deafblindness from the researcher's perspective. The final Core Sets will guide clinical practice, programs, and policies for individuals with deafblindness.

Project description:BackgroundThe National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time.MethodsEach meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined.ResultsThe body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective.ConclusionThis study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery. Implications for Rehabilitation A better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed. This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.

Project description:ObjectivesAbandonment of vision, hearing or mobility aids suggests common barriers and facilitators to ongoing device use. However, the possible interactive effects of combined hearing and vision disabilities on device use by those living with deafblindness are unclear. Here we summarise existing knowledge on variables influencing assistive technology use from the perspective of persons living with deafblindness. We used the WHO's International Classification of Functioning, Disability and Health (ICF) framework to contextualise the findings, asking 'What is currently known about variables influencing the (non-)use of assistive devices recommended for persons with deafblindness?'DesignA scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews Checklist.Data sourcesPubMed; ProQuest: ERIC; ProQuest Dissertation; ProQuest: Sociological Thesaurus; Web of Science; Scientific Electronic Library Online; Bielefeld Academic Search Engine; Pascal & Francis; APA PsycINFO and Ebsco for CINAHL were searched through 9 November 2020.Eligibility criteriaWe included peer-reviewed studies that reported on assistive technology, device abandonment/utilisation and provided data from persons living with deafblindness.Data extraction and synthesisFour team members independently scored 83 studies for eligibility.ResultsTen articles were chosen for data extraction. The emerging variables replicated established categories of barriers and facilitators: personal, device-related, environmental and intervention variables. The use of the ICF highlighted how an intermediate variable (eg, device acceptability) was necessary in order for a variable to become a barrier or a facilitator to device use.ConclusionsThe variables influencing device use by persons with deafblindness followed the same categories described for single impairments. Usability was challenged in devices that rely on the 'other' sense. Haptic and tactile aids are rarely studied. The limited available information and the dire need for assistive technologies for people with deafblindness emphasises the urgency of research and technology development for this marginalised population.

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:BackgroundThe comprehensive core set for knee dysfunction was developed to classify the functioning of people with any knee dysfunction. To be used as a clinical instrument to measure the functioning of people with knee dysfunction, the construct validity of the core set still needs to be assessed. The purpose of this study was to analyze the construct validity of the comprehensive core set for knee dysfunction as an instrument to measure functioning.MethodsA cross-sectional study with 200 participants with knee dysfunction with or without clinical diagnosis of knee pathology, with or without complaint of pain, with or without instability, and/or with or without knee movement restriction of any type. Participants were assessed using the comprehensive core set for knee dysfunction with 25 categories, the subjective form from the International Knee Documentation Committee scale, and measures of self-perceived general health and functioning. The construct validity of the core set was assessed by Rasch analysis, and the external construct validity was assessed by correlation between the score of the brief core set for knee dysfunction with the subjective form from the International Knee Documentation Committee scale, and scores of self-perception of health and functioning.ResultsTwelve categories were consistent with a unidimensional construct, with no difference in the response pattern for age, sex, educational level, and time of complaint. These categories were included in the brief core set for knee dysfunction. The mean score of the brief core set was 37 ± 21 points, a value classified as moderate impairment regarding functioning. Correlations with the subjective form from the International Knee Documentation Committee scale and scores of self-perception were adequate (p < 0.01; r > 0.5).ConclusionThe brief core set for knee dysfunction, a set with 12 categories, can be used as a clinical instrument to measure and score the functioning of people with knee dysfunction, aged between 18 and 89 years, with adequate construct validity.

Project description:BackgroundPatient-reported physical function (PF) is a key endpoint in cancer clinical trials. Using complex statistical methods, common metrics have been developed to compare scores from different patient-reported outcome (PRO) measures, but such methods do not account for possible differences in questionnaire content. Therefore, the aim of our study was a content comparison of frequently used PRO measures for PF in cancer patients.MethodsRelying on the framework of the International Classification of Functioning, Disability and Health (ICF) we categorized the item content of the physical domains of the following measures: EORTC CAT Core, EORTC QLQ-C30, SF-36, PROMIS Cancer Item Bank for Physical Function, PROMIS Short Form for Physical Function 20a, and the FACT-G. Item content was linked to ICF categories by two independent reviewers.ResultsThe 118 items investigated were assigned to 3 components ('d - Activities and Participation', 'b - Body Functions', and 'e - Environmental Factors') and 11 first-level ICF categories. All PF items of the EORTC measures but one were assigned to the first-level ICF categories 'd4 - Mobility' and 'd5 - Self-care', all within the component 'd - Activities and Participation'. The SF-36 additionally included item content related to 'd9 - Community, social and civic life' and the PROMIS Short Form for Physical Function 20a also included content related to 'd6 - domestic life'. The PROMIS Cancer Item Bank (v1.1) covered, in addition, two first-level categories within the component 'b - Body Functions'. The FACT-G Physical Well-being scale was found to be the most diverse scale with item content partly not covered by the ICF framework.DiscussionOur results provide information about conceptual differences between common PRO measures for the assessment of PF in cancer patients. Our results complement quantitative information on psychometric characteristics of these measures and provide a better understanding of the possibilities of establishing common metrics.

Dataset Information

The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures.

Introduction

Evidence acquisition

Evidence synthesis

Conclusions

Publications

The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures.

Similar Datasets

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