HIV Disability Questionnaire Study (HDQ)
People living with HIV are living longer and may be living with health-related challenges from HIV, other health conditions and potential side effects from treatment. Health challenges can range from symptoms such as fatigue, pain, weakness and changes in body composition, to difficulties participating in society, such as employment or engaging in relationships. Together, these health-related challenges may be termed disability.
What do we mean by Disability?
In an earlier phase of research, people living with HIV defined disability as any physical, cognitive, mental or emotional health symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion and uncertainty (or worrying about the future) (O’Brien et al, 2008; O’Brien et al, 2009). Disability can be experienced as episodic in nature where health challenges fluctuate on a daily basis or over the longer course living with HIV. Measuring disability in the context of HIV is important for determining the impact of the disease and for identifying interventions that may reduce health-challenges.
Aim of HDQ Study?
To develop and assess the properties of the HIV Disability Questionnaire (HDQ) to describe disability experienced by adults living with HIV.
The HIV Disability Questionnaire (HDQ) is a self-administered questionnaire developed with the aim to describe the presence, severity and episodic nature of disability experienced by adults living with HIV.
HIV Disability Questionnaire
The HDQ is comprised of 69 items across six domains: physical symptoms and impairments (20 items), cognitive symptoms and impairments (3 items), mental and emotional health symptoms and impairments (11 items), uncertainty (14 items), difficulty with day-to-day activities (9 items) and challenges to social inclusion (11 items). Each item consists of a statement about a health-related challenge and has both a five point ordinal response scale asking the respondent to rate the challenge on the day of administration (from 0 to 4) and a nominal response scale asking whether the challenge fluctuated (or changed) over the past week (‘Yes’ or ‘No’). An additional item asks individuals to classify their health as having a ‘good day’ or ‘bad day’ living with HIV. The HDQ takes about 11 minutes to complete.
The HDQ is under a Creative Commons Licence. For more information on how to access the HDQ go to:
Item Generation: The items in the HDQ were derived from the Episodic Disability Framework, a conceptual framework of disability derived from the perspectives of adults living with HIV in Canada (O’Brien et al, 2008; O’Brien et al, 2009). The HDQ actively involved people living with HIV in its development and had a Community Advisory Committee that worked to ensure that the HDQ is culturally relevant, sensitive and applicable to people living with HIV (O’Brien et al, 2014).
The HDQ demonstrates sensibility, internal consistency, reliability, construct validity and test-retest reliability when administered to samples of community-dwelling adults living with HIV in Canada, Ireland, United States, and the United Kingdom.
Phase 1 – Sensibility Assessment
We administered the HDQ, a sensibility questionnaire (that asked about ease of use, format, and quality of questions) and conducted a structured qualitative interview with 22 adults living with HIV and five experienced HIV clinicians.
Phase 2 – Confirming the Domain Structure of the HDQ
We administered the HDQ to 361 adults living with HIV. We performed a statistical analysis called a confirmatory factor analysis to confirm the domain structure (number of sections) of the HDQ.
Phase 3- Reliability and Construct Validity Assessment
We administered the HDQ at 2 time points one week apart to 139 adults living with HIV. Time one HDQ administration was paired with seven health status questionnaires (WHODAS-II, Short Form (36) Health Survey (SF-36), Center for Epidemiologic Studies Depression Scale (CES-D), Medical Outcomes Study Social Support Survey (MOS-SSS), HIV Symptom Index, Brief COPE, Berger’s HIV Stigma Scale) and a demographic questionnaire. We administered the HDQ alone at time 2, one week later.
What are the Main Findings?
Phase 1- Sensibility Assessment
The HDQ demonstrated sensibility in terms of question wording, content, language used and format. Themes from the interviews indicated the HDQ was easy to complete and captured the episodic nature of disability in the context of HIV.
O’Brien KK, Bayoumi AM, Bereket T, Swinton M, Alexander R, King K, Solomon P. Sensibility Assessment of the HIV Disability Questionnaire. Disability and Rehabilitation. 2013 Apr;35(7):566-77. doi: 10.3109/09638288.2012.702848. Epub 2012 Jul 21.
Phase 2- Confirming the Domain (scoring) Structure of the HDQ
Results confirmed the HDQ has a 6 domain structure (physical symptoms and impairments (20 items); cognitive symptoms and impairments (3 items); emotional and mental health symptoms and impairments (11 items); uncertainty (14 items); difficulties with day-to-day activities (9 items); and challenges to social inclusion (12 items)).
O`Brien KK, Bayoumi AM, Stratford P, Solomon P. Which dimensions of disability severity does the HIV Disability Questionnaire (HDQ) measure? An exploratory factor analysis. Disability and Rehabilitation. 2015;37(13):1193-1201. doi: 10.3109/09638288.2014.949358. Epub 2014 Aug 13.
Phase 3- Reliability and Construct Validity Assessment
Of the 235 participants (139 Canada; 96 Ireland), the majority were men (74 % Ireland; 82 % Canada) and were taking antiretroviral therapy (88 % Ireland; 91 % Canada). Compared with Irish participants, Canadian participants were older (median age: 48 versus 41 years) and reported living with a higher median number of comorbidities (4 versus 1).
Internal Consistency Reliability: Cronbach’s alpha for Irish and Canadian participants were 0.97 (95 % confidence interval (CI): 0.97–0.98) and 0.96 (95 % CI: 0.95–0.98), respectively, for the severity scale and 0.98 (95 % CI: 0.97–0.98) and 0.96 (95 % CI: 0.95–0.98), respectively, for the episodic scale.
Construct Validity: Of the 40 construct validity correlation hypotheses, 32 (80 %) and 22 (55 %) were supported among the Canadian and Irish samples respectively; both (100 %) known group hypotheses were also supported.
Test-Retest Reliability: Intraclass Correlation Coefficient (ICC) values for Canadian participants ranged from 0.80 (95 % CI: 0.71, 0.86) in the cognitive domain to 0.89 (95 % CI: 0.83, 0.92) in the social inclusion domain.
O’Brien KK, Solomon P, Bergin C, O’Dea S, Iku N, Stratford P, Bayoumi AM. Reliability and validity of a new HIV-specific questionnaire with adults living with HIV in Canada and Ireland: the HIV Disability Questionnaire (HDQ). Health and Quality of Life Outcomes. 2015. 13:124.
The HDQ demonstrates sensibility, internal consistency reliability and a variable degree of construct validity when administered to adults living with HIV in Canada and Ireland. The HDQ demonstrates test-retest reliability when administered to adults with HIV in Canada.
Manuscripts documenting measurement properties of the HDQ for use with samples of community-dwelling adults living with HIV in the United States and the United Kingdom are currently under review.
What are the Next Steps for the HDQ?
We are assessing the responsiveness and interpretability (clinical importance) of the HDQ and developing a short-form version of the HDQ (SF-HDQ) to facilitate use of the HDQ in clinical and community-based practice.
HDQ Research Team
Kelly O’Brien (University of Toronto), Patty Solomon (McMaster University), Ahmed Bayoumi (St. Michael’s Hospital & University of Toronto); Colm Bergin (GUIDE Clinic, St. James’s Hospital), Richard Harding (King’s College London), Aileen Davis (University Health Network & University of Toronto)
HDQ Community Advisory Committee Members
Kenneth King (Community Member), James Murray (Ontario Ministry of Health and Long-Term Care), Suzanne Paddock (Toronto People with AIDS Foundation).
The HDQ development study was funded by a grant from the Canadian Institutes of Health Research (CIHR), HIV/AIDS Research Program and a Michael DeGroote Postdoctoral Fellowship (McMaster University). Kelly O’Brien was supported by a CIHR New Investigator Award (2013-2017). Kelly O’Brien is currently supported by a Canada Research Chair in Episodic Disability and Rehabilitation.