Developing a short-form version of the HIV Disability Questionnaire (SF-HDQ) for use in clinical practice: a Rasch analysis
TL;DR: In this paper, the authors developed a short-form version of the HIV Disability Questionnaire (SF-HDQ) to facilitate use in clinical and community-based practice among adults living with HIV.
Abstract: Disability is an increasingly important health-related outcome to consider as more individuals are now aging with Human Immunodeficiency Virus (HIV) and multimorbidity. The HIV Disability Questionnaire (HDQ) is a patient-reported outcome measure (PROM), developed to measure the presence, severity and episodic nature of disability among adults living with HIV. The 69-item HDQ includes six domains: physical, cognitive, mental-emotional symptoms and impairments, uncertainty and worrying about the future, difficulties with day-to-day activities, and challenges to social inclusion. Our aim was to develop a short-form version of the HIV Disability Questionnaire (SF-HDQ) to facilitate use in clinical and community-based practice among adults living with HIV.
We used Rasch analysis to inform item reduction using an existing dataset of adults living with HIV in Canada (n = 941) and Ireland (n = 96) who completed the HDQ (n = 1037). We evaluated overall model fit with Cronbach’s alpha and Person Separation Indices (PSIs) (≥ 0.70 acceptable). Individual items were evaluated for item threshold ordering, fit residuals, differential item functioning (DIF) and unidimensionality. For item threshold ordering, we examined item characteristic curves and threshold maps merging response options of items with disordered thresholds to obtain order. Items with fit residuals > 2.5 or less than − 2.5 and statistically significant after Bonferroni-adjustment were considered for removal. For DIF, we considered removing items with response patterns that varied according to country, age group (≥ 50 years versus < 50 years), and gender. Subscales were considered unidimensional if ≤ 5% of t-tests comparing possible patterns in residuals were significant. We removed 34 items, resulting in a 35-item SF-HDQ with domain structure: physical (10 items); cognitive (3 items); mental-emotional (5 items); uncertainty (5 items); difficulties with day-to-day activities (5 items) and challenges to social inclusion (7 items). Overall models’ fit: Cronbach’s alphas ranged from 0.78 (cognitive) to 0.85 (physical and mental-emotional) and PSIs from 0.69 (day-to-day activities) to 0.79 (physical and mental-emotional). Three items were rescored to achieve ordered thresholds. All domains demonstrated unidimensionality. Three items with DIF were retained because of their clinical importance. The 35-item SF-HDQ offers a brief, comprehensive disability PROM for use in clinical and community-based practice with adults living with HIV.
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TL;DR: A systematic review and meta-analysis approach was adopted as per the PRISMA guidelines, targeting articles published in PubMed, Google Scholar and Scopus from January 2021 to March 30, 2021 as discussed by the authors.
26 citations
TL;DR: The profile of disability is characterised using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors in Canada, UK, USA and Ireland.
Abstract: Introduction As the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID. Methods and analysis In phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test–retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach’s alphas (internal consistency reliability), and intraclass correlation coefficients (test–retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic–clinical–community partnership building on foundational work in ED measurement, Long COVID and rehabilitation. Ethics and dissemination This study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.
9 citations
TL;DR: In this paper , the authors conducted a literature review and a qualitative study based on four focus group discussions (FGDs) with key informants in Spain to identify the most burdensome health-related issues experienced by people living with HIV.
Abstract: In settings with high antiretroviral therapy coverage, numerous health-related issues continue to undermine the health and health-related quality of life (HRQoL) of people living with HIV (PLHIV). As part of a larger study to develop and validate a new patient-reported outcome measure for use in HIV clinical care in Spain, we sought to identify the most burdensome health-related issues experienced by PLHIV in order to determine which issues should be addressed in the new instrument.We conducted a literature review and a qualitative study based on four focus group discussions (FGDs) with key informants in Spain. Participants were selected via purposive sampling. Two FGDs convened 16 expert HIV service providers, and two convened 15 PLHIV with diverse epidemiological profiles. FGDs followed semi-structured interview scripts and incorporated an exercise to prioritise the most critical health-related issues among those named in the discussions. Content analysis was conducted using MAXQDA 12.The analysis of FGD data identified several broad categories of issues that were perceived to negatively affect PLHIV. The most frequently named issues fell within the categories of social problems; physical symptoms; psychological problems; and sexuality-related problems. Regarding social problems, stigma/discrimination was by far the issue raised the most frequently. In the prioritisation exercise, stigma/discrimination was also ranked as the most burdensome issue by both service providers and PLHIV. Within the physical symptoms category, the issues named most frequently were sleep-related problems, fatigue, physical pain and body fat changes. Regarding psychological problems, FGD participants most commonly spoke of emotional distress in general terms, and also called attention to depression and anxiety. In the prioritisation exercise, both service providers and PLHIV ranked psychological well-being as the second-most important issue following stigma. Sexuality-related problems that were reported included sexually transmitted infections, hormonal problems, lack of libido, and general sexual dissatisfaction.PLHIV are negatively affected by a wide range of health-related issues. HIV-related stigma and psychological well-being remain major challenges. Identifying and addressing these and other issues in routine clinical care supports healthy aging and may ultimately contribute to better health and HRQoL outcomes in this population.
3 citations
TL;DR: The Short-Form HIV Disability Questionnaire (SF-HDQ) as discussed by the authors was developed to measure the presence, severity and episodic nature of health challenges across six domains and assess the sensibility, utility and implementation of the short-form disability questionnaire in clinical practice.
Abstract: Objectives The Short-Form HIV Disability Questionnaire (SF-HDQ) was developed to measure the presence, severity and episodic nature of health challenges across six domains. Our aim was to assess the sensibility, utility and implementation of the SF-HDQ in clinical practice. Design Mixed methods study design involving semistructured interviews and questionnaire administration. Participants We recruited adults living with HIV and HIV clinicians in Canada, Ireland and the USA. Methods We electronically administered the SF-HDQ followed by a Sensibility Questionnaire (face and content validity, ease of usage, format) and conducted semistructured interviews to explore the utility and implementation of the SF-HDQ in clinical practice. The threshold for sensibility was a median score of >5/7 (adults living with HIV) and>4/7 (HIV clinicians) for ≥80% of items. Qualitative interview data were analysed using directed content analysis. Results Median sensibility scores were >5 (adults living with HIV; n=29) and >4 (HIV clinicians; n=16) for 18/19 (95%) items. Interview data indicated that the SF-HDQ represents the health-related challenges of living with HIV and other concurrent health conditions; captures the daily episodic nature of HIV; and is easy to use. Clinical utility included measuring health challenges and change over time, guiding referral to specialists and services, setting goals, facilitating communication and fostering a multidisciplinary approach to care. Considerations for implementation included flexible, person-centred approaches to administration, and communicating scores based on personal preferences. Conclusions The SF-HDQ possesses sensibility and utility for use in clinical settings with adults living with HIV and HIV clinicians in three countries.
1 citations
TL;DR: The HDQ has value in clinical practice, including its role in assessing disability, facilitating communication, tailoring treatments, and guiding referrals, and recommendations for HDQ implementation included the importance of score interpretability, shortening the questionnaire, and tailoring administration to the individual.
Abstract: Our aim was to examine the utility of the HIV Disability Questionnaire (HDQ), a patient-reported outcome measure for use in clinical practice from the perspectives of people living with HIV (PLWH) and healthcare providers. We conducted a qualitative descriptive study. Fifteen PLWH and five healthcare providers participated in an interview, of which ten PLWH participated in a follow-up focus group discussion. The HDQ has value in clinical practice, including its role in assessing disability, facilitating communication, tailoring treatments, and guiding referrals. Strengths of the HDQ included its comprehensiveness, relevance of domains, and importance of specific items. Concerns related to length of the HDQ, the potential for some items to trigger emotional response, and negative connotations with the term ‘disability.’ Recommendations for HDQ implementation included the importance of score interpretability, shortening the questionnaire, and tailoring administration to the individual. Results suggest the HDQ possesses clinical utility with PLWH and healthcare providers.
1 citations
References
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TL;DR: The guidelines described in this document are based on a review of cross-cultural adaptation in the medical, sociological, and psychological literature and led to the description of a thorough adaptation process designed to maximize the attainment of semantic, idiomatic, experiential, and conceptual equivalence between the source and target questionnaires.
Abstract: With the increase in the number of multinational and multicultural research projects, the need to adapt health status measures for use in other than the source language has also grown rapidly. 1,4,27 Most questionnaires were developed in English-speaking countries, 11 but even within these countries, researchers must consider immigrant populations in studies of health, especially when their exclusion could lead to a systematic bias in studies of health care utilization or quality of life. 9,11 The cross-cultural adaptation of a health status selfadministered questionnaire for use in a new country, culture, and/or language necessitates use of a unique method, to reach equivalence between the original source and target versions of the questionnaire. It is now recognized that if measures are to be used across cultures, the items must not only be translated well linguistically, but also must be adapted culturally to maintain the content validity of the instrument at a conceptual level across different cultures. 6,11‐13,15,24 Attention to this level of detail allows increased confidence that the impact of a disease or its treatment is described in a similar manner in multinational trials or outcome evaluations. The term “cross-cultural adaptation” is used to encompass a process that looks at both language (translation) and cultural adaptation issues in the process of preparing a questionnaire for use in another setting. Cross-cultural adaptations should be considered for several different scenarios. In some cases, this is more obvious than in others. Guillemin et al 11 suggest five different examples of when attention should be paid to this adaptation by comparing the target (where it is going to be used) and source (where it was developed) language and culture. The first scenario is that it is to be used in the same language and culture in which it was developed. No adaptation is necessary. The last scenario is the opposite extreme, the application of a questionnaire in a different culture, language and country—moving the Short Form 36-item questionnaire from the United States (source) to Japan (target) 7 which would necessitate translation and cultural adaptation. The other scenarios are summarized in Table 1 and reflect situations when some translation and/or adaptation is needed. The guidelines described in this document are based on a review of cross-cultural adaptation in the medical, sociological, and psychological literature. This review led to the description of a thorough adaptation process designed to maximize the attainment of semantic, idiomatic, experiential, and conceptual equivalence between the source and target questionnaires. 13 . Further experience in cross-cultural adaptation of generic and diseasespecific instruments and alternative strategies driven by different research groups 18 have led to some refinements
8,523 citations
Book•
01 Jan 2006TL;DR: In this article, the authors present a detailed, worked-through example drawn from psychology, management, and sociology studies illustrate the procedures, pitfalls, and extensions of CFA methodology.
Abstract: "With its emphasis on practical and conceptual aspects, rather than mathematics or formulas, this accessible book has established itself as the go-to resource on confirmatory factor analysis (CFA). Detailed, worked-through examples drawn from psychology, management, and sociology studies illustrate the procedures, pitfalls, and extensions of CFA methodology. The text shows how to formulate, program, and interpret CFA models using popular latent variable software packages (LISREL, Mplus, EQS, SAS/CALIS); understand the similarities and differences between CFA and exploratory factor analysis (EFA); and report results from a CFA study. It is filled with useful advice and tables that outline the procedures. The companion website offers data and program syntax files for most of the research examples, as well as links to CFA-related resources. New to This Edition *Updated throughout to incorporate important developments in latent variable modeling. *Chapter on Bayesian CFA and multilevel measurement models. *Addresses new topics (with examples): exploratory structural equation modeling, bifactor analysis, measurement invariance evaluation with categorical indicators, and a new method for scaling latent variables. *Utilizes the latest versions of major latent variable software packages"--
7,620 citations
Book•
01 Apr 2001
TL;DR: This volume contends that Rasch measurement is the model of choice because it is the closest to realizing the sort of objective fundamental measurement so long revered in the physical sciences.
Abstract: For many researchers, the Rasch model provides a very practical solution to data analysis in the social sciences. This volume contends that Rasch measurement is the model of choice because it is the closest to realizing the sort of objective fundamental measurement so long revered in the physical sciences. Trevor Bond has worked with leading Rasch theoreticians for more than 15 years, advising developmentalists and teachers on how to conduct and interpret Rasch analyses of their own data. After each of his many research presentations, Dr. Bond was asked to recommend a suitable text for those who wish to learn more about Rasch analysis. Unfortunately, the books published to date require a significant knowledge of statistics and not easily accessible to many practicing researchers. This lack of a suitable introductory text is the driving force behind this book.
The goals of this authored volume are:
* to present an accessible overview of the basic properties and principles of Rasch analysis, that does not require a sophisticated statistical background,
* to demonstrate how Rasch analysis can be applied to a number of generic problems encountered by psychologists and educators, and
* to prepare readers for performing their own analyses and interpreting the results.
This book is ideal for all researchers in the human sciences interested in learning how to actually implement the Rasch model with their own data.
4,482 citations
Book•
08 Dec 1993
TL;DR: The use and Abuse of Factor Analysis in Research References Index is illustrated with examples from Personality Tests and a comparison of the use and abuse of factor analysis in the context of clinical trials.
Abstract: List of Figures and Tables 1. A General Description of Factor Analysis 2. Statistical Terms and Concepts 3. Principal Components Analysis 4. Other Methods of Factor Analysis 5. Rotation of Factors 6. Confirmatory Factor Analysis and Path Analysis 7. The Interpretation and Use of Factor Analysis: Examples from Personality Tests 8. Factor Analysis in Test Construction 9. Factor Analysis in a Wider Context 10. Interpreting Confirmatory and Path Analyses 11. Summary and Conclusions: The Use and Abuse of Factor Analysis in Research References Index
3,661 citations
TL;DR: A simulation of a clinical trial of the treatment of coronary artery disease by allocating 1073 patient records from past cases into two “treatment” groups at random failed to show any significant difference in survival between those patients allocated to the two treatments.
Abstract: Many published papers include large numbers of significance tests. These may be difficult to interpret because if we go on testing long enough we will inevitably find something which is “significant.” We must beware of attaching too much importance to a lone significant result among a mass of non-significant ones. It may be the one in 20 which we expect by chance alone.
Lee et al simulated a clinical trial of the treatment of coronary artery disease by allocating 1073 patient records from past cases into two “treatment” groups at random.1 They then analysed the outcome as if it were a genuine trial of two treatments. The analysis was quite detailed and thorough. As we would expect, it failed to show any significant difference in survival between those patients allocated to the two treatments. Patients were then subdivided by two variables which affect prognosis, the number of diseased coronary vessels and whether the left ventricular contraction pattern was normal or abnormal. A significant difference in survival between the two “treatment” groups was found in those patients with three diseased vessels (the maximum) and abnormal ventricular contraction. As this would be the subset of patients with the worst prognosis, the finding would be easy to account for by saying that the superior “treatment” …
3,450 citations