scholarly journals Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Heidi Anttila ◽  
Susanna Tallqvist ◽  
Minna Muñoz ◽  
Sanna Leppäjoki-Tiistola ◽  
Outi Mäkitie ◽  
...  
Keyword(s):  
Skeletal Dysplasia ◽  
Content Validity ◽  
Target Population ◽  
Self Report ◽  
International Classification Of Functioning ◽  
Measurement Information ◽  
Health Functioning ◽  
Core Set ◽  
Patient Reported ◽  
The Face

Abstract Background Little is known about the spectrum of everyday challenges that people with skeletal dysplasia face because of their health and functioning. We aimed to identify factors related to health, functioning and disability in people with skeletal dysplasia, and their challenges with accessibility in order to form a self-reported questionnaire for national data collection. The comprehensive musculoskeletal post-acute core set of the International Classification of Functioning, Disability and Health (ICF) was used as a framework. Methods An iterative, participatory and qualitative process was used to formulate a questionnaire. Items were searched from Patient-Reported Outcomes Measurement Information System and from other self-report instruments, additional items were formulated using ICF linking rules. Expert panels from the target population assessed the face and content validity in thematic interviews. Results The questionnaire demonstrated its relevance, comprehensiveness and feasibility for people with skeletal dysplasia. The ICF linkages showed the contents’ correspondence to the construct. Expert panels added 15 categories and one on chapter level to the core set and confirmed content validity. The final survey covers 86 ICF categories and 173 ICF-linked items that were grouped to 33 questions. Conclusions The content of the questionnaire proved to be sufficiently valid for people with skeletal dysplasia. It can be used to explore their health, functioning, disability and accessibility to develop care and rehabilitation policies, to plan services and to provide information to various parties involved.

scholarly journals Proposal to extend the PROMIS® item bank v2.0 ‘Ability to Participate in Social Roles and Activities’: item generation and content validity

2020 ◽  
Vol 29 (10) ◽  
pp. 2851-2861
Author(s):  
Lisette M. van Leeuwen ◽  
Sietske J. Tamminga ◽  
Margarita Ravinskaya ◽  
Astrid de Wind ◽  
Elisabeth A. Hahn ◽  
...  
Keyword(s):  
Social Participation ◽  
Content Validity ◽  
Large Scale ◽  
Social Roles ◽  
Item Bank ◽  
International Classification Of Functioning ◽  
Measurement Information ◽  
Item Generation ◽  
Expert Review ◽  
Patient Reported

Abstract Purpose Previous research indicated that the Patient-Reported Outcomes Measurement Information System (PROMIS®) item bank v2.0 ‘Ability to Participate in Social Roles and Activities’ may miss subdomains of social participation. The purpose of this study was to generate items for these missing subdomains and to evaluate their content validity. Methods A three-step approach was followed: (1) Item generation for 16 International Classification of Functioning Disability and Health subdomains currently not covered by the item bank; (2) Evaluation of content validity of generated items through expert review (n = 20) and think-aloud interviews with a purposeful sample of people with and without (chronic) health conditions (n = 10), to assess item comprehensibility, relevance, and comprehensiveness; and 3) Item revision based on the results of step 2, in a consensus procedure. Results First, 48 items were generated. Second, overall, content experts indicated that the generated items were relevant. Furthermore, based on experts’ responses, items were simplified and ‘participation in social media’ was identified as an important additional subdomain of social participation. Additionally, ‘participating in various social roles simultaneously’ was identified as a missing item. Based on the responses of the interviewed adults items were simplified. Third, in total 17 items, covering 17 subdomains, were proposed to be added to the original item bank. Discussion The relevance, comprehensibility and comprehensiveness of the 17 proposed items were supported. Whether the proposed extension of the item bank leads to better psychometric properties of the item bank should be tested in a large-scale field study.

scholarly journals Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody–associated Vasculitis Using the OMERACT Process

2015 ◽  
Vol 42 (11) ◽  
pp. 2204-2209 ◽  
Author(s):  
Joanna C. Robson ◽  
Nataliya Milman ◽  
Gunnar Tomasson ◽  
Jill Dawson ◽  
Peter F. Cronholm ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Outcome Measures ◽  
Working Group ◽  
Patient Reported Outcomes ◽  
Outcome Measurement ◽  
Antineutrophil Cytoplasmic Antibody ◽  
International Classification Of Functioning ◽  
Measurement Information ◽  
Core Set ◽  
Patient Reported

Objective.Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group has been at the forefront of outcome development in the field and has achieved OMERACT endorsement of a core set of outcomes for AAV. Patients with AAV report as important some manifestations of disease not routinely collected through physician-completed outcome tools; and they rate common manifestations differently from investigators. The core set includes the domain of patient-reported outcomes (PRO). However, PRO currently used in clinical trials of AAV do not fully characterize patients’ perspectives on their burden of disease. The OMERACT vasculitis working group is addressing the unmet needs for PRO in AAV.Methods.Current activities of the working group include (1) evaluating the feasibility and construct validity of instruments within the PROMIS (Patient-Reported Outcome Measurement Information System) to record components of the disease experience among patients with AAV; (2) creating a disease-specific PRO measure for AAV; and (3) applying The International Classification of Functioning, Disability and Health to examine the scope of outcome measures used in AAV.Results.The working group has developed a comprehensive research strategy, organized an investigative team, included patient research partners, obtained peer-reviewed funding, and is using a considerable research infrastructure to complete these interrelated projects to develop evidence-based validated outcome instruments that meet the OMERACT filter of truth, discrimination, and feasibility.Conclusion.The OMERACT vasculitis working group is on schedule to achieve its goals of developing validated PRO for use in clinical trials of AAV.

scholarly journals Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects – a cross-sectional survey study

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Hanna Hyvönen ◽  
Heidi Anttila ◽  
Susanna Tallqvist ◽  
Minna Muñoz ◽  
Sanna Leppäjoki-Tiistola ◽  
...  
Keyword(s):  
Skeletal Dysplasia ◽  
International Classification ◽  
International Classification Of Functioning ◽  
Survey Study ◽  
Measurement Information ◽  
Disability And Health ◽  
Cross Sectional Survey ◽  
Skeletal Dysplasias ◽  
Patient Reported

Abstract Background Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia. Methods Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set’s categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items. Results Altogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p < 0.001) and the pain interfered more their daily lives (p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p < 0.001). They met challenges in self-care, acquisition of goods and services and household tasks (p < 0.001) and in participating in close social relationships, leisure time activities (p < 0.001) and associations and organizational services (p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p < 0.001) and felt having less support given by family and friends (p = 0.022). They used more social and health services and experienced more dissatisfaction with those. Conclusions Our study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

scholarly journals NCOG-70. RELIABILITY AND VALIDITY OF A NEW SELF-REPORT INDEX OF COGNITIVE CONCERNS IN BRAIN TUMOR PATIENTS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii145-ii145
Author(s):  
Giuliana Zarrella ◽  
Alice Perez ◽  
Jorg Dietrich ◽  
Michael Parsons
Keyword(s):  
Brain Tumor ◽  
Verbal Memory ◽  
Cognitive Abilities ◽  
Convergent Validity ◽  
Discriminant Validity ◽  
Reliability And Validity ◽  
Cognitive Testing ◽  
Self Report ◽  
Measurement Information ◽  
Patient Reported

Abstract INTRODUCTION Subjective cognitive dysfunction is an important outcome measure in neuro-oncology and may provide additional information beyond performance-based neuropsychological testing. The Functional Assessment of Cancer Therapy-Brain (FACT-Br) is a frequently used quality of life (QoL) measure that includes indices of physical, emotional, social, and neurologic aspects of disease, but does not measure cognitive concerns. This study seeks to develop and validate an index of self-reported cognition derived from existing items on the FACT-Br. METHODS 145 patients (Mage=51.08, Medu=15.63) with heterogeneous brain tumor diagnoses completed neuropsychological evaluation including cognitive testing and self-report measures. Nine FACT-Br items regarding cognition were combined to form the Cognitive Index (CI). Reliability of the CI was measured with Cronbach’s alpha. Concurrent validity was assessed by correlating the CI with the Patient-Reported Outcomes Measurement Information System (PROMIS) Cognitive Abilities-8 or PROMIS Cognitive Concerns-8. Discriminant validity was assessed by correlation of the CI with other FACT-Br indices and the Beck Depression and Anxiety Inventories (BDI, BAI). RESULTS Internal consistency within the CI was high (Cronbach’s a 0.864). The CI correlated strongly with the PROMIS-Abilities (r =.680; p&lt; 0.001) and PROMIS-Concerns (r=.780; p&lt; 0.001) indicating high convergent validity. Moderate correlations were observed between the CI and the physical and functional subscales of the FACT (r=.453 and .555), whereas correlations with the social and emotional functioning subscales were weaker (r=.381 and .325). The FACT-Br-CI correlated strongly with BDI (r=-.622) and more weakly with the BAI (r=-.344). Consistent with prior literature, the CI showed modest correlations with neuropsychological measures, including verbal memory encoding (r=.300), verbal fluency (r=.252) and a composite measure of cognition (r=.249; all p’s&lt; .01). CONCLUSIONS The FACT-Br-CI is a reliable and valid measure of self-reported cognition. Studies that include the FACT-Br could be retrospectively analyzed to assess self-reported cognitive outcomes, enriching the information gained from prior research.

scholarly journals Development and content validity of the Abilitator: A self-report questionnaire on work ability and functioning aimed at the population in a weak labour market position

2020 ◽  
Author(s):  
Miia Wikström ◽  
Heidi Anttila ◽  
Minna Savinainen ◽  
Anne Kouvonen ◽  
Matti Joensuu
Keyword(s):  
Labour Market ◽  
Work Ability ◽  
Content Validity ◽  
Target Group ◽  
Self Report ◽  
World Health ◽  
International Classification Of Functioning ◽  
Health Measurement ◽  
Market Position ◽  
Labour Market Position

Abstract Background: The unemployed have lower work ability and poorer health than the employed. This situation deteriorates when unemployment continues. The long-term unemployed often have co-morbidities and face many other challenges. This increases the need for a multidimensional assessment of work ability and functioning in different service settings. In this study, we describe the development and analyse the content validity of the Abilitator, a self-report questionnaire on work ability and functioning for those in a weak labour market position. Methods: The Abilitator was developed in 2014–2017. Its construct was assessed by members of academic expert panels (n=30), practical expert panels of professionals (n=700) and target group clients (n=28). The structure and the content of the questionnaire was co-developed in 29 workshops and adjusted twice based on the expert panels’ feedback. The Abilitator was also implemented among target group clients (n=3360) in different services and projects. During its development the Abilitator was linked to the International Classification of Functioning, Disability and Health (ICF). The content validation process followed the guidelines recommended by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) panel. Results: The construct of the Abilitator combines the multidimensional and biopsychosocial models of work ability and functioning. It also includes aspects of social inclusion and employability. It evaluates social, psychological, cognitive and physical functioning, and the ability to cope with everyday life. The content of these concepts was validated by the academic and practical expert panels. The Abilitator’s 79 ICF codes covered 57% of the Generic, 77% of the Brief Vocational Rehabilitation, and 8% of the Minimal Environmental ICF Core Sets. When compared with the Work Ability Index (WAI) and the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the direct equivalences of the ICF codes were 36% and 44%, respectively. Conclusion: The Abilitator sufficiently comprehensively covers the relevant aspects to enable the assessment of the overall work ability and functioning of the population in a weak labour market position.

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.

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