A 24-Item Questionnaire Links Stigma and Social Deprivation to Viremia in People With HIV

Antiretroviral therapy has transformed HIV infection into a manageable chronic condition, yet the burden patients carry extends far beyond viral suppression. A research team led by María Fuster-Ruapodaca of the National Distance Education University (UNED) in Madrid has now validated a brief questionnaire designed to capture that burden systematically, and its findings reveal something striking: the stigma and socioeconomic deprivation it measures are associated with higher viral loads in the very patients who attend routine clinic visits.

The instrument, known as the HIV Burden Questionnaire, was developed to identify the most pressing needs of people living with HIV in routine care. It asks 24 items spanning eight domains: stigma, mental health, socioeconomic deprivation, sexuality, sleep and fatigue, cognitive difficulties, physical symptoms, and social support. The team previously built the tool through qualitative research with patients and clinicians, and the current study set out to confirm its psychometric properties and its associations with clinical markers in a large cohort.

To do so, the researchers drew on the HIV Burden Cohort, a Spanish cohort of people living with HIV in clinical care. Participants completed the questionnaire online through a dedicated mobile application, alongside a battery of validated instruments measuring related constructs. The team also collected clinical data, including viral load, CD4 cell count, and the presence of non-AIDS-related comorbidities, at the time of questionnaire administration and at a follow-up visit.

The psychometric results were robust. Internal consistency for the eight domain scores ranged from acceptable to excellent, and confirmatory factor analysis supported the eight-domain structure. The domain scores correlated in expected directions with the external instruments, providing convergent validity evidence. The questionnaire also discriminated between participants with and without specific clinical conditions, supporting its criterion validity.

The clinical associations were the most striking finding. Higher stigma and socioeconomic deprivation scores were associated with higher viral load, even though the vast majority of participants had undetectable viremia at the time of testing. The researchers also found that participants with higher deprivation scores had lower CD4 cell counts and a higher prevalence of non-AIDS-related comorbidities. These associations persisted after adjustment for age, sex, and route of HIV acquisition.

The findings carry important implications for clinical practice. The team argues that the questionnaire can serve as a rapid screening tool to identify patients whose psychosocial burden may be undermining their health, and that the associations with viremia suggest that stigma and deprivation may be operating through biological pathways, not merely through behavioral ones. The researchers emphasize that the tool is brief enough for routine use and that its domain structure allows clinicians to target specific areas of need.

The study also highlights the value of patient-generated instruments. The questionnaire was built from qualitative research with patients and clinicians, and its validation in a large cohort demonstrates that such tools can capture clinically meaningful constructs that conventional measures may miss. The researchers argue that the instrument can complement existing measures and that its use may help integrate psychosocial care into routine HIV management.

The team acknowledges limitations, including the cross-sectional design of the clinical associations and the online administration of the questionnaire, which may have excluded patients without digital access. The researchers also note that the cohort was drawn from Spanish clinical settings, and that further validation in other countries and languages is needed. Nonetheless, they argue that the instrument fills an important gap and that its associations with clinical markers demonstrate its value for routine care.

The findings position the questionnaire as a practical tool for integrating psychosocial assessment into routine HIV management, and its associations with viremia suggest that stigma and socioeconomic deprivation may be operating through biological pathways, not merely through behavioral ones. The researchers argue that the instrument can help clinicians identify patients whose burden may be undermining their health and that its use may help integrate psychosocial care into routine HIV management.

The distinction between viral suppression and genuine wellbeing has become a central theme in contemporary HIV medicine. Antiretroviral regimens now routinely achieve undetectable viral loads, yet people living with HIV continue to report elevated rates of depression, anxiety, sleep disturbance, and social disadvantage compared with the general population. This paradox has prompted researchers to argue that the success of antiretroviral therapy has, in a sense, created a new measurement problem: laboratory markers alone no longer capture what matters most to patients as they age with the virus. Patient-reported outcome measures emerged as a response to this gap, but the field has struggled with a proliferation of instruments that are either too long for busy clinics or too narrow to reflect the interconnected nature of psychological and social burdens.

The eight domains assessed by the CST-HIV were not chosen arbitrarily. Each corresponds to a concern that has been independently documented as prevalent and consequential in HIV populations. Anticipated stigma, for example, differs from enacted stigma in that it measures the expectation of future discrimination rather than experienced events, and this anticipatory form has been linked in prior research to avoidance of care, reduced disclosure, and diminished engagement with treatment. Material deprivation captures a cluster of hardships—economic instability, housing precarity, food insecurity—that are increasingly recognized as social determinants of health with direct biological consequences. Sleep disturbance and fatigue, meanwhile, are among the most commonly reported complaints in aging HIV cohorts, often overlapping with but not fully explained by depression.

The statistical approach used in the validation study deserves some explanation for readers unfamiliar with psychometric methods. Confirmatory factor analysis tests whether the pattern of responses to questionnaire items fits a pre-specified structure—in this case, eight distinct but potentially correlated domains—rather than allowing the data alone to determine the structure. Internal consistency, reported here using McDonald’s omega coefficients ranging from 0.86 to 0.89, reflects how coherently items within each domain measure a common underlying construct. Values in this range are generally considered strong, suggesting that each domain score is a reliable summary of its constituent items. Convergent validity was established by demonstrating that each CST-HIV domain correlated substantially with an established instrument measuring a related construct, with correlation coefficients between 0.65 and 0.79 in absolute value—strong enough to indicate the domains are measuring something real and shared, but not so high as to suggest redundancy with existing tools.

The associations between CST-HIV domains and clinical markers, while modest in magnitude, are noteworthy precisely because they appeared in a population where most participants had achieved viral suppression. The correlation between material deprivation and viral load (rho = 0.13) and between anticipated stigma and CD4 count (rho = −0.16) are small by conventional standards, but small effects in a largely suppressed cohort may signal mechanisms that operate at the margins of clinical control. Several pathways have been proposed in the literature. Chronic stress associated with stigma and deprivation activates hypothalamic-pituitary-adrenal axis activity and systemic inflammation, which could theoretically affect immune recovery. Behavioral pathways are also plausible: people experiencing deprivation may struggle with housing instability, food insecurity, or transportation barriers that complicate consistent clinic attendance and medication adherence. The cross-sectional design of the study cannot distinguish between these possibilities, and the researchers are careful not to overclaim causality.

The finding that sexual satisfaction was lower among participants aged 50 and above, with a moderate effect size, aligns with a broader literature on aging with HIV. As the population of people living with HIV grows older—largely a success story of antiretroviral therapy—questions about sexual health, intimacy, and age-related changes in libido and function have moved from the periphery to the center of comprehensive care. Many clinical settings still lack routine protocols for discussing sexual wellbeing with older patients, and a brief screening domain dedicated to sexuality may help normalize these conversations.

The CoRIS cohort itself merits comment. Established in 2004 and drawing participants from dozens of centers across most Spanish autonomous regions, it represents one of the larger prospective HIV cohorts in Europe and includes people who were antiretroviral-naïve at entry, allowing longitudinal tracking from early infection onward. Validation studies conducted within well-characterized cohorts benefit from the availability of retrospectively collected clinical data, which the researchers used to examine whether questionnaire responses aligned with clinical indicators measured both currently and at earlier time points.

It is worth situating this work within the wider movement toward person-centered HIV care. International policy frameworks, including World Health Organization guidance, have increasingly emphasized that quality of life should be treated as a fourth 90—complementing the targets of diagnosis, treatment coverage, and viral suppression. Operationalizing that ambition requires instruments that clinics can realistically administer. The developers of the CST-HIV explicitly designed the tool for brevity and multidimensionality, aiming to avoid the trade-off between comprehensiveness and feasibility that has limited the uptake of longer instruments. Whether routine implementation improves outcomes remains a question for future implementation research, but the current validation provides the psychometric foundation such trials would require.

Generalizability remains an open question. The study population was drawn from Spanish public healthcare settings, and cultural factors shape how stigma, sexuality, and deprivation are experienced and reported. Cross-cultural adaptation and validation in other languages and healthcare systems would be necessary before the tool can be recommended internationally. Additionally, the cross-sectional nature of the clinical associations means that reverse causation cannot be excluded—poorer health may itself exacerbate feelings of deprivation or anticipated stigma. Longitudinal follow-up within cohorts like CoRIS could help clarify the direction of these relationships and determine whether screening-driven interventions produce measurable improvements in both reported wellbeing and clinical markers over time.

Subject of Research: Validation of a brief psychosocial burden questionnaire in people with HIV and its associations with viral load and clinical markers.

Article Title: Validity evidence for the Clinic Screening Tool for HIV (CST-HIV) addressing factors that undermine health-related quality of life in people living with HIV

Article References: Fuster-RuizdeApodaca, M. J., Recio, P., White, T. M., Iniesta, C., Izquierdo, R., Portocarrero, J. A., Lazarus, J. V., & Jarrín, I. (2026). Validity evidence for the Clinic Screening Tool for HIV (CST-HIV) addressing factors that undermine health-related quality of life in people living with HIV. Frontiers in Psychology, 17, Article 1940441. https://doi.org/10.3389/fpsyg.2026.1940441

Image Credits: AI Generated

DOI: 10.3389/fpsyg.2026.1940441

Keywords: HIV, questionnaire validation, stigma, socioeconomic deprivation, viral load, psychosocial burden, clinical practice, Validity, evidence, Clinic, Screening, Tool