Progress on Incorporating the Patient Perspective in Outcome Assessment in Rheumatology and the Emergence of Life Impact Measures at OMERACT 9

2009 ◽  
Vol 36 (9) ◽  
pp. 2071-2076 ◽  
Author(s):  
JOHN R. KIRWAN ◽  
STANTON NEWMAN ◽  
PETER S. TUGWELL ◽  
GEORGE A. WELLS ◽  
SARAH HEWLETT ◽  
...  
Keyword(s):  
Patient Perspective ◽  
Educational Interventions ◽  
International Classification Of Functioning ◽  
Measurement Instruments ◽  
Core Set ◽  
Life Impact ◽  
Rheumatic Conditions ◽  
Sleep Questionnaires ◽  
The Impact ◽  
Emergence Of Life

The Patient Perspective Workshop included over 100 researchers and 18 patient participants from 8 countries. Following preconference reading and short plenary presentations, breakout groups considered work undertaken on measurement of sleep, assessing interventions to develop the effective consumer, and assessing psychological and educational interventions. The workshop explored the best way to identify other outcome domains (and instruments) that should be measured in observational or interventional studies with broader intentions than simply altering outcomes captured in the traditional “core set” plus fatigue. Four sleep questionnaires showed promise and will be the subject of further study. The Effective Consumer scale (EC-17) was reviewed and the concept Effective Consumer was well received. Participants thought it worthwhile to measure the skills and attributes of an effective consumer and develop an intervention that would include education in all of the scale’s categories. Assessment of educational and psychological interventions requires a wider set of instruments than is currently used; these should relate to the purpose of the intervention. This principle was extended to include wider measures of the impact of disease on life, as indicated in the International Classification of Functioning, Disability and Health. Life impact measure sets covering domains appropriate to different rheumatic conditions and focused on different interventions might be defined by future OMERACT consensus. Measurement instruments within these domains that are valid for use in rheumatic conditions can then be identified and, in the case of psychological and educational interventions, chosen to fit with the purpose of the intervention.

The comprehensive Icf core set for schizophrenia from the perspective of psychiatrists: A content-validity study using the Delphi technique

2017 ◽  
Vol 41 (S1) ◽  
pp. s803-s803
Author(s):  
L. Nuño ◽  
M. Barrios ◽  
E. Rojo ◽  
J. Gomez-Benito ◽  
G. Guilera
Keyword(s):  
Content Validity ◽  
World Health ◽  
International Classification Of Functioning ◽  
Functional Impairments ◽  
Icf Core Set ◽  
The Third ◽  
Core Set ◽  
Competing Interest ◽  
Health Organization ◽  
The Impact

IntroductionSchizophrenia is a chronic mental illness associated with several functional impairments. There has been an increasing interest in the impact of schizophrenia on functioning. The development of the Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for schizophrenia, a shortlist of 97 ICF categories that are relevant for describing functioning and disability of people living with schizophrenia, has derived from this interest.ObjectivesThis study aims to explore the content validity of this core set from the perspective of psychiatrists.MethodsIn a 3-round Delphi survey, psychiatrists experienced in schizophrenia treatment were asked about patients’ problems, resources and environmental factors they treat in patients with schizophrenia.ResultsA total of 352 psychiatrists from 65 countries representing all six World Health Organization regions completed the first round questionnaire. The response rate at the third round was 86%. Answers were linked to 422 ICF categories. Of all these, 109 ICF categories reached consensus (≥ 75% agreement) at the third round. Eighty-seven out of the 97 ICF categories that form the comprehensive ICF core set for schizophrenia were represented in this list. All the comprehensive ICF core set for schizophrenia categories reached consensus except five categories.ConclusionsThe content validity of the comprehensive ICF core set for schizophrenia from the perspective of psychiatrists was largely supported. However, further research is needed including other health professionals (e.g., psychologists, nurses and occupational therapists) to further obtain new content validity evidences.Disclosure of interestThe authors have not supplied their declaration of competing interest.

The Most Commonly Used Instruments in Research on Functioning in Schizophrenia

2019 ◽  
pp. 1-10
Author(s):  
Maite Barrios ◽  
Georgina Guilera ◽  
M. Dolores Hidalgo ◽  
Eric C. F. Cheung ◽  
Raymond C. K. Chan ◽  
...  
Keyword(s):  
Clinical Symptoms ◽  
Wisconsin Card Sorting Test ◽  
Health Condition ◽  
International Classification Of Functioning ◽  
Card Sorting ◽  
Measurement Instruments ◽  
Core Set ◽  
General Functioning ◽  
Trail Making ◽  
Sorting Test

Abstract. A comprehensive assessment of functioning in schizophrenia is essential to plan appropriate interventions for helping individuals with this health condition. The International Classification of Functioning, Disability and Health (ICF) offers a theoretical framework for assessing functioning and disability. Our aim was to identify the most frequently used measurement instruments reported in studies on functioning in schizophrenia, to conduct a content comparison with respect to the ICF, and to compare the categories extracted from these instruments with those covered by the Brief ICF-Core Set for schizophrenia. A structured literature search of studies on functioning in schizophrenia was conducted using Medline, CINAHL, and PsycINFO. The items of the top 20 measurement instruments were then linked to the ICF classification system. The most commonly used instruments were neuropsychological tests (i.e., Wisconsin Card Sorting Test and Trail Making Test) and measures of clinical symptoms (i.e., PANSS) and general functioning (i.e., GAF). The linking process resulted in 45 ICF categories (25 from Body functions, 1 from Body structures, 14 from Activities and Participation, and 5 from the Environmental factors component). Most of the top 20 instruments are not specifically designed for patients with schizophrenia or for assessing functioning, but rather are general standardized tests widely used to measure a broad range of outcome variables in several health conditions. Our results suggest a lack of an internationally accepted, commonly used, specific and comprehensive gold standard to assess functioning in individuals with schizophrenia.

A candidate core set of outcome measures based on the international classification of functioning, disability and health for clinical studies on lower limb orthoses

2011 ◽  
Vol 35 (3) ◽  
pp. 269-277 ◽  
Author(s):  
Merel Brehm ◽  
Sicco A Bus ◽  
Jaap Harlaar ◽  
Frans Nollet
Keyword(s):  
Lower Limb ◽  
Clinical Studies ◽  
International Classification Of Functioning ◽  
Foot Orthoses ◽  
Measurement Instruments ◽  
Disability And Health ◽  
Core Set ◽  
Ankle Foot Orthoses ◽  
Core Sets

Background: Although many core sets of measurement concepts have been published in the literature, this has not been done for the field of lower limb orthoses. Objectives: This paper provides an overview of the measurement concepts that are relevant in lower limb orthotic evaluations, and it proposes a candidate Core Set of outcome measures to be used in clinical studies on ankle-foot orthoses (AFOs) and knee-ankle-foot orthoses (KAFOs). Study Design: Literature review. Methods: The International Classification of Functioning, Disability and Health (ICF) was used as framework to select relevant concepts. Results and conclusion: Measurement concepts covering all ICF levels of functioning were identified as relevant for the Core Set, including functions of the joints and bones (b710–b729), muscle functions (b730–b749), gait pattern functions (b770), walking (b450), moving around in different locations (d460), and daily-life functioning (d5–d9). Further validation of this candidate Core Set through a formal decision-making process is needed to obtain consensus among experts in the field. Based on such a consensus, the next step will be to systematically review the literature and identify those measurement instruments that are best suited to assess the proposed concepts, based on their psychometric properties in a given sample and context. Thereafter, we suggest that this ICF Core Set of measurement instruments should be applied in orthotic studies on AFOs and KAFOs in ambulatory patients with gait problems. Clinical relevance Although many ICF Core Sets have been published, this has not been done for the field of lower limb orthoses. We feel that such a Core Set is urgently needed, to enable comparison of results, and establish evidence on the efficacy of orthotic treatment, which will improve patient care.

scholarly journals International Classification of Functioning, Disability, and Health in women with breast cancer: a proposal for measurement instruments

2013 ◽  
Vol 29 (6) ◽  
pp. 1083-1093 ◽  
Author(s):  
Flávia Nascimento de Carvalho ◽  
Rosalina Jorge Koifman ◽  
Anke Bergmann
Keyword(s):  
Breast Cancer ◽  
Cancer Diagnosis ◽  
Breast Cancer Diagnosis ◽  
International Classification ◽  
International Classification Of Functioning ◽  
Measurement Instruments ◽  
Therapeutic Approaches ◽  
Disability And Health ◽  
Core Set

The International Classification of Functioning, Disability, and Health (ICF) aims at standardization, but its applicability requires consistent instruments. In Brazil, invasive therapeutic approaches are frequent, leading to functional alterations. The current study thus aimed to identify and discuss instruments capable of measuring ICF core set codes for breast cancer. The review included ICF studies in women with breast cancer diagnosis and studies with the objective of translating and validating instruments for the Brazilian population, and consistent with the codes. Review studies, systematic or not, were excluded. Eight instruments were selected, and the WHOQOL-Bref was the most comprehensive. The use of various instruments showed 19 coinciding codes, and the instruments as a whole covered 58 of the total of 81 codes. The use of multiple instruments is time-consuming, so new studies are needed to propose parsimonious tools capable of measuring functioning in women treated for breast cancer.

scholarly journals Assessing the Impact of Mental Health Difficulties on Young People's Daily Lives: Protocol for a Scoping Umbrella Review of Measurement Instruments

2021 ◽  
Author(s):  
Karolin R Krause ◽  
Sophie Chung ◽  
Terri Rodak ◽  
Kristin Cleverley ◽  
Nancy J Butcher ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Measurement Properties ◽  
Bibliographic Databases ◽  
Measurement Instruments ◽  
Umbrella Review ◽  
Global Functioning ◽  
Daily Lives ◽  
Life Impact ◽  
The Impact

Introduction: An important consideration for determining the severity of mental health symptoms is their impact on youth's daily lives. Those wishing to assess life impact face several challenges: First, various measurement instruments are available, including of global functioning, health-related quality of life (HRQoL), and well-being. Existing reviews have tended to focus on one of these domains; consequently, a comprehensive overview is lacking. Second, the extent to which such instruments truly capture distinct concepts is unclear. Third, many available scales conflate symptoms and their impact, thus undermining much needed analyses of associations between the two. Methods and analysis: A scoping umbrella review will examine existing reviews of life impact measures for use with 6-24-year-olds in the context of mental health and well-being research. We will systematically search five bibliographic databases (MEDLINE, Embase, APA PsycINFO, CINAHL, Web of Science), and conduct systematic record screening, data extraction and charting based on methodological guidance by the Joanna Briggs Institute (JBI). Data synthesis will involve the tabulation of scale characteristics, feasibility, and measurement properties, and the use of summary statistics to synthesize how these instruments operationalize life impact. Ethics and dissemination: This study will provide a comprehensive road map for researchers and clinicians seeking to assess life impact in youth mental health, providing guidance in navigating available measurement options. We will seek to publish the findings in a leading peer-reviewed journal in the field. Formal research ethics approval will not be required. Registration details: This protocol was registered prospectively with the Open Science Framework (osf.io/jfqdv).

The ambiguity of the concept of participation in measurement instruments: operationalization of participation influences research outcomes

2014 ◽  
Vol 28 (12) ◽  
pp. 1225-1236 ◽  
Author(s):  
Hillegonda A Stallinga ◽  
Pieter U Dijkstra ◽  
Isaac Bos ◽  
Yvonne F Heerkens ◽  
Petrie F Roodbol
Keyword(s):  
Social Relations ◽  
Sense Of Coherence ◽  
Neuromuscular Disease ◽  
Prediction Models ◽  
University Hospital ◽  
International Classification Of Functioning ◽  
Personal Factors ◽  
Measurement Instruments ◽  
Disease Impact ◽  
The Impact

Objective: This study explores, based on the International Classification of Functioning, Disability and Health, the consequences of different operationalizations of participation in regression models predicting participation in one sample of patients. Design: Cross-sectional, comparative study. Setting: Department of Neurology of a University Hospital. Subjects: A total of 677 patients with a Neuromuscular Disease. Measures: Participation was measured using the Neuromuscular Disease Impact Profile questionnaire, the RAND-36 Item Health Survey (social functioning, role limitations—physical, role limitations—emotional) and the Impact on Participation and Autonomy questionnaire (autonomy outdoors, social relations). Potential predictors of participation included type of neuromuscular disease, body functions (measured with Neuromuscular Disease Impact Profile), activities (measured with Neuromuscular Disease Impact Profile), environmental factors (measured with Neuromuscular Disease Impact Profile), and personal factors (measured with the 13-item Sense of Coherence questionnaire). The results were controlled for patient characteristics. Results: Participation was statistically predicted by different determinants depending on the operationalization used for participation. Additionally, the regression coefficients differed significantly. Body functions and activities were predictors in five out of six operationalizations of participation. Sense of coherence predicted participation in all of the operationalizations. The explained variance of the different models ranged from 25% (RAND-36 role limitations—emotional) to 65% (Neuromuscular Disease Impact Profile). Conclusions: Different operationalizations of participation result in different prediction models. Lack of conceptual consensus makes participation an ambiguous concept in research, and this ambiguity makes evidence-based decisions directed at enhancing participation difficult. Participation needs to be operationalized in an unambiguous and standard way in order to improve the comparability of outcomes.

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