High Concordance between Self-Reported Adherence, Treatment Outcome and Satisfaction with Care Using a Nine-Item Health Questionnaire in InfCareHIV

Background In this cross-sectional study we present an integrated analysis of a self-reported Health Questionnaire and socio-demographic and treatment outcome data from the national Swedish HIV cohort, InfCareHIV. Objectives To evaluate the Health Questionnaire and identify the main determinants of adherence. Methods A total of 2,846 patients answered a nine-item disease-specific Health Questionnaire between 2012 and 2014, corresponding to 44% of all active patients in the national InfCareHIV cohort. The questionnaire assessed patient related outcome measures (PROMs) regarding health and antiretroviral treatment (ART) and patient related experience measures (PREMs) regarding involvement in care and satisfaction with the care provider. Result We found the Health Questionnaire to be valid and reliable when used in ordinary clinical practice. There was a high concordance between self-reported adherence to ART in the past seven days and treatment outcome, with 94% of patients who reported optimal adherence having a viral load <50 copies/ml. The main determinants of optimal adherence were heterosexual transmission path, being born in Sweden, being male, not reporting experience of ART side effects and being fully satisfied with care. Conclusion The nine-item Health Questionnaire can identify patients at risk of treatment failure, those in need of clinical assessment of adverse events and those with impaired physical health

Development and psychometric testing of a barriers to HIV testing scale among individuals with HIV infection in Sweden; The Barriers to HIV testing scale-Karolinska version

© 2015 Wiklander et al. Background: Barriers to HIV testing experienced by individuals at risk for HIV can result in treatment delay and further transmission of the disease. Instruments to systematically measure barriers are scarce, but could contribute to improved strategies for HIV testing. Aims of this study were to develop and test a barriers to HIV testing scale in a Swedish context. Methods: An 18-item scale was developed, based on an existing scale with addition of six new items related to fear of the disease or negative consequences of being diagnosed as HIV-infected. Items were phrased as statements about potential barriers with a three-point response format representing not important, somewhat important, and very important. The scale was evaluated regarding missing values, floor and ceiling effects, exploratory factor analysis, and internal consistencies. Results: The questionnaire was completed by 292 adults recently diagnosed with HIV infection, of whom 7 were excluded (≥9 items missing) and 285 were included (≥12 items completed) in the analyses. The participants were 18-70 years old (mean 40.5, SD 11.5), 39 % were females and 77 % born outside Sweden. Routes of transmission were heterosexual transmission 63 %, male to male sex 20 %, intravenous drug use 5 %, blood product/transfusion 2 %, and unknown 9 %. All scale items had <3 % missing values. The data was feasible for factor analysis (KMO = 0.92) and a four-factor solution was chosen, based on level of explained common variance (58.64 %) and interpretability of factor structure. The factors were interpreted as; personal consequences, structural barriers, social and economic security, and confidentiality. Ratings on the minimum level (suggested barrier not important) were common, resulting in substantial floor effects on the scales. The scales were internally consistent (Cronbach's aα 0.78-0.91). Conclusions: This study gives preliminary evidence of the scale being feasible, reliable and valid to identify different types of barriers to HIV testing

Development of a 12-item short version of the HIV stigma scale

BACKGROUND: Valid and reliable instruments for the measurement of enacted, anticipated and internalised stigma in people living with HIV are crucial for mapping trends in the prevalence of HIV-related stigma and tracking the effectiveness of stigma-reducing interventions. Although longer instruments exist, e.g., the commonly used 40-item HIV Stigma Scale by Berger et al., a shorter instrument would be preferable to facilitate the inclusion of HIV stigma in more and broader surveys. Therefore, the aim of this work was to develop a substantially shorter, but still valid, version of the HIV Stigma Scale. METHODS: Data from a psychometric evaluation of the Swedish 40-item HIV Stigma Scale were reanalysed to create a short version with 12 items (three from each of the four stigma subscales: personalised stigma, disclosure concerns, concerns with public attitudes and negative self-image). The short version of the HIV stigma scale was then psychometrically tested using data from a national survey investigating stigma and quality of life among people living with HIV in Sweden (n = 880, mean age 47.9 years, 26% female). RESULTS: The hypothesized factor structure of the proposed short version was replicated in exploratory factor analysis without cross loadings and confirmatory factor analysis supported construct validity with high standardised effects (>0.7) of items on the intended scales. The χ(2) test was statistically significant (χ(2) = 154.2, df = 48, p 0.4 for all items, with a variation indicating that the broadness of the concept of stigma had been captured. All but two aspects of HIV-related stigma that the instrument is intended to cover were captured by the selected items in the short version. The aspects that did not lose any items were judged to have acceptable psychometric properties. The short version of the instrument showed higher floor and ceiling effects than the full-length scale, indicating a loss of sensitivity in the short version. Cronbach's α for the subscales were all >0.7. CONCLUSIONS: Although being less sensitive in measurement, the proposed 12-item short version of the HIV Stigma Scale has comparable psychometric properties to the full-length scale and may be used when a shorter instrument is needed

Getting more from heterogeneous HIV-1 surveillance data in a high immigration country: estimation of incidence and undiagnosed population size using multiple biomarkers

BACKGROUND: Most HIV infections originate from individuals who are undiagnosed and unaware of their infection. Estimation of this quantity from surveillance data is hard because there is incomplete knowledge about (i) the time between infection and diagnosis (TI) for the general population, and (ii) the time between immigration and diagnosis for foreign-born persons. METHODS: We developed a new statistical method for estimating the incidence of HIV-1 and the number of undiagnosed people living with HIV (PLHIV), based on dynamic modelling of heterogeneous HIV-1 surveillance data. The methods consist of a Bayesian non-linear mixed effects model using multiple biomarkers to estimate TI of HIV-1-positive individuals, and a novel incidence estimator which distinguishes between endogenous and exogenous infections by modelling explicitly the probability that a foreign-born person was infected either before or after immigration. The incidence estimator allows for direct calculation of the number of undiagnosed persons. The new methodology is illustrated combining heterogeneous surveillance data from Sweden between 2003 and 2015. RESULTS: A leave-one-out cross-validation study showed that the multiple-biomarker model was more accurate than single biomarkers (mean absolute error 1.01 vs ≥1.95). We estimate that 816 [95% credible interval (CI) 775-865] PLHIV were undiagnosed in 2015, representing a proportion of 10.8% (95% CI 10.3-11.4%) of all PLHIV. CONCLUSIONS: The proposed methodology will enhance the utility of standard surveillance data streams and will be useful to monitor progress towards and compliance with the 90-90-90 UNAIDS target

Longitudinal trends and determinants of patient-reported side effects on ART-a Swedish national registry study.

INTRODUCTION: The use of patient-reported outcomes (PROs) to systematically quantify adverse events (AE) will assist in the improvement of medical care and the QoL of patients living with HIV (PLWH). The aim of this study was to investigate the associations between self-reported side effects and other PROs, demographics and laboratory data, and further evaluate the Health Questionnaire (HQ) as a tool for following trends in patient-reported side effects over time in relation to trends in prescribed third agent in ART. MATERIALS AND METHODS: The Swedish National Registry InfCareHiv includes an annual self-reported nine-item HQwhich is used in patient-centered HIV care in all Swedish HIV units. In this study, the experience of side effects was addressed. We analyzed 9,476 HQs completed by 4,186 PLWH together with details about their prescribed ART and relevant biomarkers collected during 2011-2017. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and mixed logistic regression. RESULTS: The cross-sectional analysis of the HQs showed that the frequency of reported side effects decreased from 32% (2011) to 15% (2017). During the same period, there was a shift in ART prescription from efavirenz (EFV) to dolutegravir (DTG) (positive correlation coefficient r = 0.94, p = 0.0016). Further, PLWH who reported being satisfied with their physical health (OR: 0.47, p = <0.001) or psychological health (OR: 0.70, p = 0.001) were less likely to report side effects than those less satisfied. CONCLUSIONS: Self-reported side effects were found to have a close relationship with the patient's ratings of their overall health situation and demonstrated a strong correlation with the sharp decline in use of EFV and rise in use of DTG, with reported side effects being halved. This study supports the feasibility of using the HQ as a tool for longitudinal follow up of trends in PROs

Stigma reduction interventions in people living with HIV to improve health-related quality of life

As the UNAIDS 90-90-90 targets for people living with HIV are increasingly being reached in many contexts, health-related quality of life, the so-called fourth 90, warrants special attention. HIV-related stigma and discrimination are major barriers for overall health-related quality of life despite impressive clinical and virological improvements in HIV care. There is a scarcity of well designed intervention studies that document stigma reduction in people living with HIV and few studies that specifically assess the effect of stigma on health-related quality of life. Further, few interventions target discrimination from providers outside of HIV-specific care or involve people living with HIV in both the design and implementation. Lastly, evidence on methods to reduce stigma in several underepresented key populations and geographical regions is insufficient and research on intersectional stigma (ie, the convergence of multiple stigmatised identities) needs further attention

Barriers to HIV testing as reported by individuals newly diagnosed with HIV infection in Sweden

Despite the availability of free and anonymous HIV testing almost 60% of Swedish patients are diagnosed late. Identifying predictors of different types of barriers could inform policy makers and health care of interventions to increase testing where needed. This cross-sectional study aimed to describe and analyze barriers to HIV testing as reported by Swedish patients newly diagnosed with HIV infection. N = 285 patients completed the 18-item Barriers to HIV Testing Scale - Karolinska Version. Descriptive analysis and logistic regressions were performed to assess the prevalence of barriers and to identify predictors for the different investigated barriers. Barriers to testing were reported by 60%. Approximately 67% of patients originating from Sweden, 50% from Sub-Saharan Africa and 75% from Eastern European/East Asian countries reported barriers. Patients who were younger and patients who self-initiated HIV testing, had greater odds of reporting a barrier than older individuals and those who were offered a test through screening or by a healthcare professional. To counteract barriers that still exist on an individual level, healthcare-initiated HIV testing could be offered more broadly and information about risks for transmission and effectiveness of HIV treatment still needs to be disseminated among both people born in Sweden and different migrant groups

Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts

PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort

Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts

PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort