New patient-reported outcome measure for HIV disability validated in the UK.


  • Jo Whelan
  • Medical News
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  • The HIV Disability Questionnaire (HDQ) is a new HIV-specific patient-reported outcome measure (PROM) designed to measure the presence, severity and episodic nature of disability among people living with HIV.
  • A UK validation study has now been published by Brown et al.
  • The HDQ provides a new way for clinicians, HIV community organisations and researchers to assess disability experienced by people living with HIV in the UK, the authors say.

The HDQ is a 69 item self-administered questionnaire with six disability domains: physical, cognitive, mental and emotional health symptoms and impairments; uncertainty; difficulty with day-to-day activities; and challenges to social inclusion. It also has one ‘good day/bad day’ health classification item. 

The study evaluated its psychometric properties in a sample of 243 males with HIV living in London, of whom 94% were taking ART, and found them to be satisfactory. The most present and severe domain of disability was uncertainty or worrying about the future. The most episodic domain was physical disability, reflecting the fluctuating nature of such symptoms in people with HIV.

The authors caution that their sample (educated urban males, mostly aged under 50) is not representative of the whole UK population of people with HIV, and call for further research into the use of HDQ with other groups.

Existing HIV-specific PROMs tend to focus on impairments and do not fully capture the breadth of disability, the authors note. They also lack items related to social inclusion and uncertainty.

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