Problems undermining the health-related quality of life of people living with HIV in Spain: a qualitative study to inform the development of a novel clinic screening tool.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Development of a Clinic Screening Tool to Identify Burdensome Health-Related Issues Affecting People Living With HIV in Spain.

BACKGROUND: Numerous health-related issues continue to undermine the health and health-related quality of life (HRQoL) of people living with HIV (PLHIV). We developed a clinic screening tool (CST-HIV) for the purpose of identifying these issues in routine specialist clinical care in Spain. METHODS: We used the following established instrument development procedures: (1) a literature review; (2) four focus group discussions (FGDs), two that convened 16 expert HIV care providers, and two that convened 15 PLHIV; (3) prioritisation, selection and definition of constructs (health-related issues) to include in the CST-HIV and drafting of initial item pool; and (4) a pilot study to analyse psychometric properties and validity of items and to determine which to retain in the final CST-HIV. The FGD interview scripts incorporated an exercise to prioritise the health-related issues perceived to have the greatest negative effect on HRQoL. The online questionnaire used for the pilot study included the pool of CST-HIV items and validated measures of each construct. RESULTS: We identified 68 articles that reported on factors associated with the HRQoL of PLHIV. The most burdensome health-related issues identified in the FGDs related to stigma, socioeconomic vulnerability, sleep/fatigue, pain, body changes, emotional distress, and sexuality. Based on the literature review and FGD findings, we selected and defined the following constructs to include in the initial CST-HIV: anticipated stigma, emotional distress, sexuality, social support, material deprivation, sleep/fatigue, cognitive problems, and physical symptoms. Two researchers wrote six to eight items for each construct. Next, 18 experts rated 47 items based on their clarity, relevance, and representativeness. Pilot testing was carried out with 226 PLHIV in Spain. We retained 24 items based on empirical criteria that showed adequate psychometric properties. Confirmatory factor analysis confirmed the eight-factor structure with a good fit to the data (RMSEA = 0.035, AGFI = 0.97, CFI = 0.99). We found strong positive correlations between the instrument's eight dimensions and validated measures of the same constructs. Likewise, we found negative associations between the dimensions of the CST-HIV and HRQoL. CONCLUSION: The CST-HIV is a promising tool for use in routine clinical care to efficiently identify and address health-related issues undermining the HRQoL of PLHIV.