The ICF, Relationship-Centred Care and Research Outcome Measurement: Carol Frattali's Impact on Aphasia Research

2015 ◽  
Vol 25 (3) ◽  
pp. 107-113 ◽  
Author(s):  
Linda Worrall ◽  
Sarah Wallace
Keyword(s):  
Outcome Measurement ◽  
Core Outcome Set ◽  
World Health ◽  
International Classification Of Functioning ◽  
International Consensus ◽  
Treatment Research ◽  
Aphasia Treatment ◽  
Health Organization ◽  
Qualitative Methodologies ◽  
Measurement Practices

Outcome measurement was a major focus of Carol Frattali's work. This article describes three aphasia research initiatives that have followed from her early publications. The first is the application of the World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) to aphasia. The Living with Aphasia: A Framework for Outcome Measurement (A-FROM) is a reinterpretation of the ICF specifically as it applies to aphasia. The Assessment for Living with Aphasia (ALA) is an assessment that is derived from the A-FROM. The second initiative is the program of research that has described aphasia and aphasia rehabilitation from the patient perspective. Using qualitative methodologies, this research has highlighted the need for relationship-centred care in aphasia services. Finally, a current project is described that seeks to gain international consensus on a core outcome set for aphasia treatment research. This will help researchers combine data in effectiveness studies. To achieve the best outcomes for people with aphasia, there is a need to realize Carol Frattali's vision and ensure the continued use of unifying frameworks, relationship-centered practice, consumer-focused research, and consistent outcome measurement practices.

scholarly journals A core outcome set for aphasia treatment research: The ROMA consensus statement

2018 ◽  
Vol 14 (2) ◽  
pp. 180-185 ◽  
Author(s):  
Sarah J Wallace ◽  
Linda Worrall ◽  
Tanya Rose ◽  
Guylaine Le Dorze ◽  
Caterina Breitenstein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Consensus Statement ◽  
Outcome Measurement ◽  
Core Outcome Set ◽  
Core Outcome ◽  
International Consensus ◽  
Patient Reported ◽  
Treatment Research ◽  
Aphasia Treatment

Background A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful, and efficient outcome data. Objective The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phases I–IV aphasia treatment studies. Methods This statement was informed by a four-year program of research, which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional wellbeing: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patient-reported satisfaction with treatment or impact of treatment (where no measures exist). Discussion Harmonization of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phases I–IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.

Core Outcomes in Aphasia Treatment Research: An e-Delphi Consensus Study of International Aphasia Researchers

2016 ◽  
Vol 25 (4S) ◽  
Author(s):  
Sarah J. Wallace ◽  
Linda Worrall ◽  
Tanya Rose ◽  
Guylaine Le Dorze
Keyword(s):  
Rating Scale ◽  
Core Outcome Set ◽  
International Classification Of Functioning ◽  
Delphi Consensus ◽  
Specific Patient ◽  
Patient Reported ◽  
Delphi Exercise ◽  
Related Quality ◽  
Treatment Research ◽  
Aphasia Treatment

Purpose The purpose of this article is to identify outcome constructs that aphasia researchers consider essential to measure in all aphasia treatment research. Method Purposively sampled researchers were invited to participate in a 3-round e-Delphi exercise. In Round 1, an open-ended question was used to elicit important outcome constructs; responses were analyzed using inductive content analysis. In Rounds 2 and 3, participants rated the importance of each outcome using a 9-point rating scale. Outcomes reaching predefined consensus criteria were further analyzed using International Classification of Functioning, Disability and Health coding. Results Eighty researchers commenced Round 1, with 72 completing the entire survey. High response rates (≥ 85%) were achieved in subsequent rounds. Consensus was reached on 6 outcomes: (a) language functioning in modalities relevant to study aims, (b) impact of treatment from the perspective of the person with aphasia (PWA), (c) communication-related quality of life, (d) satisfaction with intervention from the perspective of the PWA, (e) satisfaction with ability to communicate from the perspective of the PWA, and (f) satisfaction with participation in activities from the perspective of the PWA. Conclusions Consensus was reached that it is essential to measure language function and specific patient-reported outcomes in all aphasia treatment research. These results will contribute to the development of a core outcome set.

scholarly journals Developing a core outcome set for hand fractures and joint injuries in adults: a systematic review

2021 ◽  
pp. 175319342098371
Author(s):  
Sandeep Rajiv Deshmukh ◽  
Christos Mousoulis ◽  
Ben A. Marson ◽  
Douglas Grindlay ◽  
Alexia Karantana ◽  
...  
Keyword(s):  
Primary Outcome ◽  
Core Outcome Set ◽  
World Health ◽  
International Classification Of Functioning ◽  
Power Calculation ◽  
Core Outcome ◽  
Joint Injuries ◽  
Hand Fractures ◽  
Outcome Set ◽  
Health Organization

This study identifies the treatment outcome domains used in recently published studies on the treatment of hand fractures and joint injuries with the aim to inform development of a core outcome set. Seven databases were searched from January 2014 to March 2019 for randomized and quasi-randomized studies and large prospective observational studies. We identified 1777 verbatim outcomes in 160 eligible studies. From the verbatim outcomes we distinguished 639 unique outcomes, which we categorized into 74 outcome domains based on the World Health Organization International Classification of Functioning, Disability, and Health framework. The primary outcome was appropriately identified in only 65% (72/110) of randomized and quasi-randomized controlled trials. Of the 72 studies with a primary outcome identified, 74% (53/72) had an appropriate power calculation. The vast heterogeneity in outcome selection across studies highlights the need for a core outcome set of what outcomes to measure in future clinical research on hand fractures and joint injuries.

Sixth Edition: the New Standard

2008 ◽  
Vol 13 (1) ◽  
pp. 1-12
Author(s):  
Christopher R. Brigham ◽  
Robert D. Rondinelli ◽  
Elizabeth Genovese ◽  
Craig Uejo ◽  
Marjorie Eskay-Auerbach
Keyword(s):  
Review Process ◽  
Peer Review Process ◽  
World Health ◽  
International Classification Of Functioning ◽  
Revision Process ◽  
Sixth Edition ◽  
Impairment Ratings ◽  
Health Organization ◽  
Impairment Severity

Abstract The AMA Guides to the Evaluation of Permanent Impairment (AMA Guides), Sixth Edition, was published in December 2007 and is the result of efforts to enhance the relevance of impairment ratings, improve internal consistency, promote precision, and simplify the rating process. The revision process was designed to address shortcomings and issues in previous editions and featured an open, well-defined, and tiered peer review process. The principles underlying the AMA Guides have not changed, but the sixth edition uses a modified conceptual framework based on the International Classification of Functioning, Disability, and Health (ICF), a comprehensive model of disablement developed by the World Health Organization. The ICF classifies domains that describe body functions and structures, activities, and participation; because an individual's functioning and disability occur in a context, the ICF includes a list of environmental factors to consider. The ICF classification uses five impairment classes that, in the sixth edition, were developed into diagnosis-based grids for each organ system. The grids use commonly accepted consensus-based criteria to classify most diagnoses into five classes of impairment severity (normal to very severe). A figure presents the structure of a typical diagnosis-based grid, which includes ranges of impairment ratings and greater clarity about choosing a discreet numerical value that reflects the impairment.

The Historical Development of Burden of Treatment Compliance

2014 ◽  
Vol 19 (5) ◽  
pp. 13-15
Author(s):  
Stephen L. Demeter
Keyword(s):  
Internal Medicine ◽  
Treatment Compliance ◽  
World Health ◽  
International Classification Of Functioning ◽  
Sixth Edition ◽  
Burden Of Treatment ◽  
Specific Goal ◽  
Surrogate Measure ◽  
Health Organization

Abstract A long-standing criticism of the AMA Guides to the Evaluation of Permanent Impairment (AMA Guides) has been the inequity between the internal medicine ratings and the orthopedic ratings; in the comparison, internal medicine ratings appear inflated. A specific goal of the AMA Guides, Sixth Edition, was to diminish, where possible, those disparities. This led to the use of the International Classification of Functioning, Disability, and Health from the World Health Organization in the AMA Guides, Sixth Edition, including the addition of the burden of treatment compliance (BOTC). The BOTC originally was intended to allow rating internal medicine conditions using the types and numbers of medications as a surrogate measure of the severity of a condition when other, more traditional methods, did not exist or were insufficient. Internal medicine relies on step-wise escalation of treatment, and BOTC usefully provides an estimate of impairment based on the need to be compliant with treatment. Simplistically, the need to take more medications may indicate a greater impairment burden. BOTC is introduced in the first chapter of the AMA Guides, Sixth Edition, which clarifies that “BOTC refers to the impairment that results from adhering to a complex regimen of medications, testing, and/or procedures to achieve an objective, measurable, clinical improvement that would not occur, or potentially could be reversed, in the absence of compliance.

What's in a Name?

2013 ◽  
Vol 51 (2) ◽  
pp. 113-116 ◽  
Author(s):  
Marc J. Tassé
Keyword(s):  
Mental Retardation ◽  
Intellectual Disability ◽  
World Health Organization ◽  
International Classification Of Diseases ◽  
World Health ◽  
International Consensus ◽  
The World ◽  
Classification Of Diseases ◽  
Health Organization

Abstract The World Health Organization (WHO) is in the process of developing the 11th edition of the International Classification of Diseases (ICD–11). Part of this process includes replacing mental retardation with a more acceptable term to identify the condition. The current international consensus appears to be replacing mental retardation with intellectual disability. This article briefly presents some of the issues involved in changing terminology and the constraints and conventions that are specific to the ICD.

Functioning in Schizophrenia: Similarities and Differences Between Clinical, Patient and Expert Perspectives

2017 ◽  
Vol 41 (S1) ◽  
pp. S105-S105
Author(s):  
M. Barrios ◽  
G. Guilera ◽  
O. Pino ◽  
E. Rojo ◽  
S. Wright ◽  
...  
Keyword(s):  
Health Professionals ◽  
Health Condition ◽  
World Health ◽  
International Classification Of Functioning ◽  
Unique Contribution ◽  
Disability And Health ◽  
Clinical Patient ◽  
Competing Interest ◽  
Health Organization ◽  
Icf Core Sets

IntroductionIn 2001, the World Health Organization (WHO) created the International Classification of Functioning, Disability and Health (ICF) to offer a comprehensive and universally accepted framework to describe functioning, disability and health. The ICF Core Sets (ICF-CS) are a selection of categories that serve as a minimal standard for the assessment of functioning and disability in a specific health condition. The ICF-CS for schizophrenia was created in 2015 based on four preliminary studies that intend to capture different perspectives.ObjectivesThe aim of this study is to describe the similarities (i.e. overlap) and discrepancies (i.e. unique contribution) between the clinical, patient and expert perspectives on the most relevant problems in functioning of individuals with schizophrenia, being focused on the European WHO region.MethodsForty-four experts from 14 European countries participated in an expert survey, patients with schizophrenia were involved in four focus groups, and health professionals assessed 127 patients in relation to daily life functioning. Information gathered from these three preliminary studies was linked to the ICF.ResultsData showed that although a considerable number of second-level ICF categories agreed on the three preparatory studies (n = 54, 27.7%), each perspective provided a unique set of ICF categories. Specifically, experts reported 65 unique ICF categories, patients 23 and health professionals 11.ConclusionsEven though there were similarities between perspectives, each one underlined different areas of functioning, showing the importance of including different perspectives in order to get a complete view of functioning and disability in individuals with schizophrenia.Disclosure of interestThe authors have not supplied their declaration of competing interest.

scholarly journals Using the ICF-CY to Support Inclusive Education in Ghana

2019 ◽  
Vol 29 (1) ◽  
Author(s):  
Christiana Okyere ◽  
Catherine Donnelly ◽  
Heather Michelle Aldersey
Keyword(s):  
Inclusive Education ◽  
Children With Disabilities ◽  
Children And Youth ◽  
World Health ◽  
International Classification Of Functioning ◽  
Personal Factors ◽  
Middle Income ◽  
The World ◽  
Education In Ghana ◽  
Health Organization

The international classification of functioning, disability, and health for children and youth (ICF-CY) developed by the World Health Organization (WHO) is a framework for understanding concepts of disability specific to children and youth. This framework has been used in countries around the world to support the education of children with disabilities. In this article, we argue that the ICF-CY has the potential to inform and support Ghana’s education system and to improve the implementation of education for children with disabilities, particularly inclusive education, in Ghana. Specifically, we use children with intellectual and developmental disabilities (IDD) as an exemplar to examine how the ICF-CY can support inclusive education for children with disabilities within its main components: Body Functions and Structures, Activities and Participation, Environmental Factors, and Personal Factors. Examining the ICF-CY in these areas is significant, as many similar low- and middle-income contexts have yet to adopt the framework and may draw insights and lessons for its significance in educational contexts.

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