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The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health.

ABSTRACT: The 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.Each 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.The 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.This 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.

SUBMITTER: Osborne CL

PROVIDER: S-EPMC5724373 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

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The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health.

Osborne Candice L CL Petersson Christina C Graham James E JE Meyer Walter J WJ Simeonsson Rune J RJ Suman Oscar E OE Ottenbacher Kenneth J KJ

Disability and rehabilitation 20161019 25

<h4>Background</h4>The 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.<h4>Methods</h4>Each meaningful concept included in the BMS assessmen ...[more]

PMID: 27758149

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Project description:IntroductionThe 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 acquisitionThe 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 synthesisThe 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.ConclusionsMost 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.

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:BackgroundSevere burn injuries result in relevant restrictions of physical capacity as well as psychological and social integrity and require a specialized rehabilitation. There is a common agreement, among national as well as international burn associations, that burn rehabilitation is a complex, dynamic process which needs an interdisciplinary and specialized treatment team. There is wide agreement that more research is needed in this field.Methods/designThe aim of the study is to examine the effectiveness and efficiency of our new ICF (International Classification of Functioning, Disability and Health)-based rehabilitation for thermal injuries. Because of ethical reasons, we have chosen a prospective non-randomized design, which takes place at two different rehabilitation centers. At center A, a newly developed ICF-based rehabilitation program was established; at rehabilitation center B, a well-established rehabilitation program has existed for 20 years and is used as reference. The primary research question addresses the "Pre-post comparison of the physical and psychological outcome measurements," secondary question I looks at the "Examination of the non-inferiority of the new treatment concept with the established concept," and secondary question II is the "Analysis of the rehabilitation process based on the rehabilitation cycle." Only patients of the two burn rehabilitation centers who are insured by workers' compensation will be asked to participate in this study to avoid outcome bias by insurance status. A physical examination (physical working capacity testing, grip strength, range of motion, and scar evaluation by Cutometer and Vancouver Scar Scale) and a standardized questionnaire battery (Burn Specific Health Scale-Brief , Short Form 36, Impact of Event Scale-Revised, the German version of the Symptom Checklist, the Freiburg Social Support Questionnaire, Patient/Client Satisfaction Questionnaire, Disabilities of the Arm, Shoulder and Hand, and Lower Extremity Functional Scale ) measure physical and psychological conditions. Data will be taken on admission, during stay, and on discharge of the rehabilitation program and at follow-up 3 and 12 months after discharge. A minimum of 162 participants will be enrolled in this clinical longitudinal, prospective, observational study.DiscussionThe proof of the effectiveness of the ICF-based rehabilitation program for thermal injuries will give evidence in a comprehensive way for the first time in this field. As result, a standardized rehabilitation concept will be introduced, which can be provided to other rehabilitation institutions treating thermal injuries.Trial registrationGerman Clinical Trials Register, DRKS00017702. Registered on 2 September 2019.

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.

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.

Dataset Information

The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health.

Publications

The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health.

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