Reducing stigma is central to achieving the UNAIDS 2030 goals (42). This is because HIV-associated stigma remains a significant factor in people’s experience of living with HIV and negatively impacts on access to testing and effective prevention interventions (43). Furthermore, for some people with diagnosed HIV, it can be challenging to prioritise their HIV care and adherence to treatment if they are experiencing personal, financial, housing, immigration, or mental health difficulties (44). Increasing retention in, and adherence to treatment and support in achieving good health outcomes in turn reduces HIV transmission. Improving the quality of life for people with long-term conditions is a well-established goal for the NHS and wider health and care system (45). However, previously published data from 2 UK-based surveys (Stigma Index 2015 (18) and Positive Voices 2017 (19)) can provide some context. Table 8 summarises potential indicators that could be taken from these 2 sources. However, further work with the HIV Action Plan Implementation Steering group and with professional groups, HIV community, and academic partners will focus on further developing key indicators and the corresponding flowchart (Figure 16) to monitor quality of life and stigma for people living with HIV. It is likely these will be aligned to UNAIDS 2025 targets, which include an assessment of punitive laws and policies, less than 10% of people living with HIV experiencing stigma and discrimination and less than 10% experiencing gender inequality and violence (8). Table 8. Potential indicators for theme 5: improve quality of life and reduce stigma in people living with HIV
CodeProvisional indicator descriptionStigma Index Survey (2015)Positive Voices Survey (2017) PT5AQuality of life (Positive Voices life satisfaction)Not available7.4 PT5BPatients living with HIV reported to have been treated differently from other patients (enacted stigma)26%19% PT5CPatients living with HIV felt that they were being refused healthcare or delayed a treatment or medical procedure (perceived stigma)15%11% PT5DPatients living with HIV were worried that they would be treated differently than other patients (anticipated stigma)46%35% PT5EPatients avoided seeking healthcare when they needed it (anticipated stigma)18%24% PT5FExperience of HIV stigma in other settings among people living with HIV
Not availableNot available PT5GDisclosure of HIV status outside of healthcare settings – people with HIV who never told anyone15%13% Figure 16. Flowchart for theme 5: improve quality of life and reduce stigma An accessible text version of this flowchart is also available. Quality of life and life satisfaction In 2017, respondents to the Positive Voices survey (19) rated their life satisfaction at a score of 7.4 (compared with 7.7 in general population). In the same survey, people living with HIV reported more issues with mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, the 5 EQ-5D-5L domains (46) than the general population: for instance, 49% of respondents reported anxiety and depression compared with 30% in the general population. Recent work funded by BHIVA developed the Positive Outcomes questionnaire, an HIV-specific PROMs (47) that can be used in clinical settings to ascertain patient quality of life and healthcare needs. Stigma, discrimination and disclosure In 2017, 19% of Positive Voices survey respondents reported having been treated differently from other patients (19). In 2015, 26% of respondents to the Stigma Index survey reported this (18). Among Positive Voices survey respondents in 2017, 11% reported that they felt that they were being refused healthcare or delayed a treatment or medical procedure (19). In 2015, 15% of respondents to the Stigma Index survey reported this (18). Overall, 35% of patients surveyed in Positive Voices in 2017 were worried that they would be treated differently than other patients in healthcare settings due to their HIV status (19). This measure was 46% among respondents to the Stigma Index survey in 2015 (18). In 2017, 18% of patients surveyed in Positive Voices reported that they avoided seeking healthcare when they needed it (19). This measure was 24% among respondents to the Stigma Index survey in 2015 (18). A total of 13% of the 2017 Positive Voices survey (19) respondents had not disclosed their positive HIV status to anyone outside of healthcare settings. This measure was 15% among respondents to the Stigma Index survey (2015).