Design of the HIV Dependent Quality of Life (HIVDQoL) questionnaire and HIV Symptom Rating Questionnaire (HIVSRQ)

Aims: An HIV-specific QoL measure is needed in addition to widely used health-status tools to evaluate treatments for people living with HIV. An up-to-date symptom measure is also required, given recent innovations in antiretroviral treatments. The present research aimed to design two instruments, each in UK and US English: the HIV-Dependent Quality of Life (HIVDQoL) questionnaire and HIV Symptom Rating Questionnaire (HIVSRQ).

Methods: The format of the HIVDQoL and HIVSRQ are based on established -DQoL and -SRQ measures (e.g. ADDQoL for diabetes; ThySRQ for hypothyroidism, with copyright owned by co-author, Bradley). Items were selected from existing -DQoL and -SRQ item banks and newly drafted as needed, based on a review of relevant research, HIV specialist websites, and transcript analysis of 68 interviews conducted in UK, Germany and Spain (Murray et al, 2013). The initial HIVSRQ item list was revised following consultation with three HIV specialist clinicians. Participants, recruited via the internet by Opinion Health, were paid for their time. In-depth telephone interviews lasted approximately one hour, with questionnaires revised as needed between interviews, until no new content/changes were required. Following 10 UK interviews, a US linguist adapted the English for the US version. US interviews (11) followed, with four additional UK interviews.

Results: Participants (n=25) included 14 from the UK (including 3 women, mean age=48 [SD=9.89], HIV mean duration=16 years [SD=7.43]), 11 from the USA (including 3 women, mean age=53 [SD=11.87], HIV mean duration=19 years [SD = 9.71]). The HIVDQoL has 26 items including 10 existing, 12 modified and 5 new items. The HIVSRQ has 64 items including 31 existing, 24 modified and 9 new Items.

Conclusion: Internet recruitment and telephone interviews worked well, eliciting information from a range of participants. Designing two language versions simultaneously avoided subsequent linguistic validation, reduced unnecessary UK/US wording differences, and helped simplify the wording. Existing templates and item banks from other condition-specific -DQoLs and -SRQs facilitated the design process, thus enabling participants and researchers to focus on the content. Comparisons across questionnaires for different conditions have now become possible. Psychometric development of the HIVDQoL and HIVSRQ will follow shortly.

Cutting Edge research Plenary Submission: The research ‘demonstrates how existing questionnaire templates and item banks can expedite the design of new condition-specific instruments to measure QoL and other PROMs and facilitate comparisons across different conditions.’