The development of the International Classification of Functioning, Disability and Health Core Sets for deafblindness: A study protocol

Background Individuals with deafblindness experience a combination of hearing and vision impairments. The World Health Organization has developed a global framework referred to as the International Classification of Functioning, Disability and Health (ICF) to describe health and functioning. From the full ICF classification, a selection of categories, referred to as ICF Core Sets, provide users with a tool to describe functioning and disability in specific health conditions. There has been no ICF Core Set created for deafblindness. Given that core sets are instrumental in improving clinical practice, research, and service delivery, the aim of this study is to develop an ICF Core Set for deafblindness. Methods As part of the preparatory phase in the ICF Core Set development, there are four studies that will be conducted. This includes the [1] systematic literature review that examines the researcher’s perspective, [2] qualitative study focusing on the individuals with deafblindness experience, [3] experts survey that looks at health professional’s perspective, and [4] empirical study that examines the clinical perspective. The studies will be conducted using the principles outlined by the ICF Research Branch for the development of ICF Core Sets. The systematic literature review protocol was submitted for registration on PROSPERO CRD42021247952. Discussion An ICF Core Set created for deafblindness will benefit individuals living with deafblindness who are often excluded from social participation, policies, and services. An ICF Core Set for deafblindness will have a significant impact on healthcare professionals, policymakers, researchers, service providers and individuals with deafblindness by facilitating communication among all stakeholder to support the functioning of those with deafblindness.

ICF Linking and Cognitive Interviewing Are Complementary Methods for Optimizing Content Validity of Outcome Measures: An Integrated Methods Review

Content validity is a fundamental requirement of outcome measures. After reviewing operational needs and existing definitions, content validity we as defined as: the extent to which a measure provides a comprehensive and true assessment of the key relevant elements of a specified construct or attribute across a defined range, clearly and equitably for a stated target audience and context. ICF linkage rules from 2002, 2005, and 2019 have provide increasingly clear processes for describing and evaluating content of outcome measures. ICF Core Sets provide international reference standards of the core constructs of importance for different health conditions. Both are important as reference standards during content validation. To summarize their use as reference standards, the following summary indicators were proposed: (1) Measure to ICF linkage, (2) Measure to (Brief or Comprehensive) Core Set Absolute Linkage, (3) Measure to (Brief or Comprehensive) Core Set Unique Linkage, (4) Core Set Representation, and (5) Core Set Unique Disability Representation. Methods to assess how respondents engage with content are needed to complement ICF-linking. Cognitive interviewing is an ideal method since it used to explore how respondents interpret and calibrate response to individual items on an outcome measure. We proposed a framework for classifying these responses: Clarity/Comprehension, Relevance, Inadequate response definition, Reference Point, Perspective modification, and Calibration Across Items. Our analysis of 24 manuscripts that used ICF linking for content validation since updated linking rules were published found that authors typically used linking to validate existing measures, involved multiple raters, used 2005 linking rules, summarized content at a concept level (e.g., impairment, activity, participation) and/or use core sets as a reference standard. Infrequently, ICF linking was used to create item pools/conceptual frameworks for new measures, applied the full scope of the 2019 linking rules, used summary indicators, or integrated ICF-linking with qualitative methods like cognitive interviews. We conclude that ICF linkage is a powerful tool for content validity during development or validation of PROM. Best practices include use of updated ICF linking rules, triangulation of ICF linking with participant assessments of clarity and relevance preferably obtained using cognitive interview methods, and application of defined summary indicators.

Developing a Culturally Sensitive ICF-Based Tool to Describe Functioning of Children with Autism Spectrum Disorder: TEA-CIFunciona Version 1.0 Pilot Study

Background: Autism spectrum disorder (ASD) affects the daily functioning of children and their families; however, in Argentina, there are no standardized tools to guide the description, evaluation, and follow-up of functioning and disability of children with ASD. To fill this gap, the overarching purpose of this study was to create a novel tool guided by the International Classification of Functioning, Disability, and Health (ICF) Core Sets for ASD for clinical practice. Methods: A multistep methodology was used to identify the most relevant ICF categories for an Argentinian clinical setting. The content of this ICF-based shortlist was piloted and revised according to the results. Subsequently, a toolbox of measures was proposed to operationalize each ICF category. Finally, profiles of the functioning of 100 children with ASD were created. Results: An ICF-based tool called TEA-CIFunciona was created, consisting of 32 ICF categories (10 body functions, 15 activities and participation, 7 environmental factors categories). The application of TEA-CIFunciona incorporated a family-centered approach in ASD evaluations and helped identify functional needs. Conclusions: TEA-CIFunciona is the first ICF-based instrument that guides the description of functioning of children with ASD in Argentina. TEA-CIFunciona standardizes collaborative assessments in pediatric ASD populations in Latin American contexts.

Audiological Rehabilitation After Cochlear Implantation: A New Model Developed Based on the International Classification of Functioning, Disability and Health (ICF)

Background: There is a need for a more holistic approach to treating hearing impairment, as it affects many aspects of a person’s life, not just their hearing. This article describes how The International Classification of Functioning, Disability and Health (ICF), particularly the ICF core sets for hearing loss, can be used to plan and evaluate the audiological (re)habilitation of cochlear implant (CI) recipients. Using the ICF core sets should help clinicians better address not only hearing impairment but also its consequences.Methods: The opinions of experts were gathered on their clinical experience about the most relevant ICF categories and codes to describe audiological rehabilitation after cochlear implantation. For the relevant ICF categories, the most commonly used audiological assessment tools and methods were identified.Results: The most relevant codes for Body Functions and Structures, Activity, and Participation were identified. These include: structure of the inner ear (s260), auditory nerve (s260), brainstem (s1105), midbrain (s1101), diencephalon (s1102), and cortical lobe (s110); sound detection (b2300); sound discrimination (b2301); localization of sound source (b2302); lateralization of sound (b2303); speech discrimination (b2304); listening (d115); communicating with – receiving – spoken messages (d310); handling stress and other psychological demands (d240); using communication devices and techniques (d360); conversation (d350); family relationships (d760); school education (d820); remunerative employment (d850); and community life (d910). The appropriate questionnaires as an assessment tools were proposed.Conclusions: Using the ICF can help target the holistic (re)habilitation of CI recipients and reduce hearing loss-induced deficits in function, activity, and participation.

The influence and added value of a Standardized Assessment and Reporting System for functioning outcomes upon national rehabilitation quality reports

Objective To demonstrate the influence and added value of a Standardized Assessment and Reporting System (StARS) upon the reporting of functioning outcomes for national rehabilitation quality reports. A StARS builds upon an ICF-based (International Classification of Functioning, Disability and Health) and interval-scaled common metric. Design Comparison of current ordinal-scaled Swiss national rehabilitation outcome reports including an expert-consensus-based transformation scale with StARS-based reports through descriptive statistical methods and content exploration of further development areas of the reports with relevant ICF Core Sets. Setting Swiss national public rehabilitation outcome quality reports on the clinic level. Participants A total of 29 Swiss rehabilitation clinics provided their quality report datasets including 18 047 patients. Interventions Neurological or musculoskeletal rehabilitation. Main outcome measures Functional Independence Measure™ or Extended Barthel Index. Results Outcomes reported with a StARS tended to be smaller but more precise than in the current ordinal-scaled reports, indicating an overestimation of achieved outcomes in the latter. The comparison of the common metric’s content with ICF Core Sets suggests to include ‘energy and drive functions’ or ‘maintaining a basic body position’ to enhance the content of functioning as an indicator. Conclusions A StARS supports the comparison of outcomes assessed with different measures on the same interval-scaled ICF-based common metric. Careful consideration is needed whether an ordinal-scaled or interval-scaled reporting system is applied as the magnitude and precision of reported outcomes is influenced. The StARS’ ICF basis brings an added value by informing further development of functioning as a relevant indicator for national outcome quality reports in rehabilitation.