Why we need to re-define long-term success for people living with HIV.

Over the past few decades, the life expectancy of people living with HIV has markedly improved due to the advances in HIV diagnosis, linkage to care, and treatment. However, with these advances, a new set of challenges has emerged that must be addressed to ensure the long-term well-being of people living with HIV. In this article, as part of a wider journal supplement, we explore the unmet needs and challenges across the HIV continuum of care and re-define what long-term success looks like to support the healthy ageing of all people affected by HIV.

Long-term success for people living with HIV: A framework to guide practice.

OBJECTIVES: In recent decades, the needs of people living with HIV have evolved as life expectancy has greatly improved. Now, a new definition of long-term success (LTS) is necessary to help address the multifaceted needs of all people living with HIV. METHODS: We conducted a two-phase research programme to delineate the range of experiences of people living with HIV. The insights garnered from these research phases were explored in a series of expert-led workshops, which led to the development and refinement of the LTS framework. RESULTS: The insights generated from the research phases identified a series of themes that form a part of LTS. These themes were subsequently incorporated into the LTS framework, which includes five outcome pillars: sustained undetectable viral load, minimal impact of treatment and clinical monitoring, optimized health-related quality of life, lifelong integration of healthcare, and freedom from stigma and discrimination. A series of supporting statements were also developed by the expert panel to help in the achievement of each of the LTS pillars. CONCLUSIONS: The LTS framework offers a comprehensive and person-centric approach that, if achieved, could help improve the long-term well-being of people living with HIV and support the LTS vision of 'every person living with HIV being able to live their best life'.

A call for health systems to monitor the health-related quality of life of people living with HIV.

INTRODUCTION: The World Health Organization's (WHO's) new global health strategy on HIV represents a major step toward a broader conceptualization of HIV care. It recognizes the importance of addressing chronic care more fully and-for the first time ever-the health-related quality of life (HRQoL) of people living with HIV (PLHIV). METHODS: A thorough literature review was conducted in order to analyse how the WHO strategy on HIV for 2022-2030 addresses the monitoring of the HRQoL of PLHIV for the next decade and compared it to that of other countries and health authorities. RESULTS: Unlike for other issues, the strategy does not include quantitative targets for 2030, thus falling short of committing to monitoring global progress in improving the long-term well-being of PLHIV. CONCLUSIONS: We urge national health systems not to wait for WHO to lead on this issue. Seeking good HRQoL outcomes for PLHIV can confer far-reaching benefits on health systems. The feasibility of monitoring population-level HRQoL has been demonstrated through the use of simple tools like patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). Many countries can already set HRQoL monitoring targets, similar to those presented in this viewpoint, while we work toward an agreed minimum metric for use by all countries.

Intersectionality of stigmas and health-related quality of life in people ageing with HIV in China, Europe, and Latin America.

People ageing with HIV face crucial challenges that can compromise their long-term health, one of which is stigma. HIV-related stigma can interact with other coexistent inequities to create a unique oppression system that results in traumatic experiences. This intersectionality of stigmas represents a new inequality that is greater than the sum of the original component inequalities. In this Series paper we review the literature regarding the intersectionality of HIV-related and ageing-related stigma and health-related quality of life among people ageing with HIV in China, Europe, and Latin America-three regions that represent distinct epidemiological and cultural trends in terms of HIV and ageing. Substantial gaps in the literature were identified, in particular a scarcity of data from Latin America. We also found inconsistencies between countries in terms of definitions and reporting practices related to people ageing with HIV. Research that fully considers the intersectional stigmas faced by this vulnerable population will contribute to advancing the United Nations 2030 Agenda for Sustainable Development.

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.

Different Associations of Intentional and Non-Intentional Non-Adherence Behaviors with Patient Experience with Healthcare and Patient Beliefs in Medications: A Survey of Patients with Chronic Conditions.

PURPOSE: To investigate relationships between intentional and non-intentional non-adherence behaviors and patient experience with healthcare and beliefs in medications. PATIENTS AND METHODS: This is a post hoc analysis of a cross-sectional anonymous survey distributed between May and September 2017 to patients with rheumatic disease, inflammatory bowel disease, HIV infection or diabetes mellitus from outpatient and primary care clinics in Spain. Patients answered five questions about non-adherence behaviors and completed questionnaires on their experience with healthcare (IEXPAC: Instrument to Evaluate the EXperience of PAtients with Chronic diseases) and beliefs about medicines (BMQ: Beliefs About Medicines Questionnaire). RESULTS: Among 1530 respondents, 53% showed ≥1 non-adherence behavior; 35% had ≥1 non-intentional non-adherence behavior, and 33% had ≥1 intentional non-adherence behavior. Patients with HIV infection had the lowest frequency of intentional non-adherence behaviors. Non-intentional non-adherence was associated with patient beliefs (inversely with BMQ overall score) and patient experiences (inversely with IEXPAC Factor 3 sub-score, self-management). Intentional non-adherence was strongly associated with beliefs scores (directly with BMQ concerns and inversely with BMQ necessity sub-score) and inversely associated with HIV infection. CONCLUSION: The different associations of intentional and non-intentional non-adherence behaviors found in this study help to understand how patient experiences and beliefs influence medical non-adherence, and in the development of strategies for reducing non-adherence.

Association between non-adherence behaviors, patients' experience with healthcare and beliefs in medications: a survey of patients with different chronic conditions.

Objective: The objective of the current work was to assess the frequency of non-adherence behaviors and potential association with patients' experience with healthcare and beliefs in medicines self-reported by patients with four different chronic conditions.Methods: Patients responded anonymously to a survey comprising five non-adherence behaviors (based on physician and patient input), an assessment of patients' experience with healthcare using the validated Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC), and a validated Spanish version of the Beliefs about Medicines Questionnaire (BMQ). Associations of non-adherence behavior were analyzed using logistic regression models.Results: Of 1530 respondents, 53.1% reported ≥1 non-adherence behavior. Non-adherence rates were 59.8% in diabetes mellitus (DM), 56.0% in rheumatic disease, 55.6% in inflammatory bowel disease, and 42.8% in human immunodeficiency virus (HIV) infection patients (p < .001). IEXPAC and BMQ scores were higher in adherent vs. non-adherent patients. In multivariate analysis, non-adherence behavior was strongly associated with lower overall BMQ, lower BMQ Necessity scores and higher BMQ Concerns scores (p < .001 for all), and with a lower IEXPAC self-management score (p = .007), but not with the overall IEXPAC score. Non-adherence was more frequent in DM patients compared with HIV infection patients (p < .001).Conclusions: Patients' beliefs in medicines-a lower perception for the necessity of medication, and higher concerns in taking medication-and low patient self-management experience score were associated with non-adherence behavior. These are modifiable aspects that need to be addressed to increase medication adherence in chronic disease.

The Influence of Patient Experience with Healthcare on the Health-Related Quality of Life of People Living with HIV: An Observational Cross-Sectional Survey.

INTRODUCTION: Patient experience is central to the quality of healthcare delivery, showing positive associations with several outcome measures. The main objectives of this study are to analyze the influence of patient experience on the health-related quality of life in people living with HIV and the role played by treatment complexity and clinical care. METHODS: We conducted a cross-sectional survey with 467 patients with HIV. We used the Instrument for Evaluation of the Experience of Chronic Patients and the Health-related Quality of Life Questionnaire (EQ-5D-5L). We analyzed a predictive model through the partial least squares (PLS) method. RESULTS: The patient self-management scores showed the highest positive relationship with the patient's health-related quality of life (ß = 0.24, ß = 0.32, p < 0.0001). Patients' treatment complexity had a negative influence on health-related quality of life (ß = - 0.21, ß = - 0.28, p < 0.0001). The complexity of clinical care had negative effects on health-related quality of life, both directly (ß = - 0.37, ß = - 0.19, p < 0.0001) and through its negative influence on the productive interactions with healthcare professionals (ß = - 0.21, p < 0.0001) and patient self-management factors (ß = - 0.21, p < 0.0001). The effects of patient experience dimensions on their health-related quality of life were higher in people living with HIV > 50 years old (p < 0.05). CONCLUSIONS: Patient experience mainly influenced the health-related quality of life of older people living with HIV. The treatment and clinical care complexity played an important role in degrading the patients' experience and their quality of life. More integrated care would benefit the health-related quality of life of people living with HIV. FUNDING: This project was funded by Merck Sharp & Dohme, Spain.

Healthcare Experience and their Relationship with Demographic, Disease and Healthcare-Related Variables: A Cross-Sectional Survey of Patients with Chronic Diseases Using the IEXPAC Scale.

BACKGROUND: Patient experience is acknowledged as a principal aspect of quality healthcare delivery, and it has implications with regard to outcomes. OBJECTIVES: Our objective was to evaluate the healthcare experience of patients with chronic diseases to identify patient-perceived healthcare gaps and to assess the influence of demographic and healthcare-related variables on patient experiences. METHODS: A cross-sectional survey was delivered to adult patients with chronic diseases: diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, inflammatory bowel disease (IBD) or rheumatic diseases. Patient experiences were assessed with the Instrument for Evaluation of the Experience of Chronic Patients (IEXPAC) questionnaire, with possible scores ranging from 0 (worst) to 10 (best experience). RESULTS: Of the 2474 patients handed the survey, 1618 returned it (response rate 65.4%). Patients identified gaps in healthcare related mainly to access to reliable information and services, interaction with other patients and continuity of healthcare after hospital discharge. The mean ± standard deviation (SD) IEXPAC score was 6.0 ± 1.9 and was higher for patients with HIV (6.6 ± 1.7) than for those with rheumatic disease (5.5 ± 2.0), IBD (5.9 ± 2.0) or DM (5.9 ± 1.9) (p < 0.001). In multivariate models, better overall IEXPAC experience was associated with follow-up by the same physician, follow-up by a nurse, receiving healthcare support from others and treatment with subcutaneous or intravenous drugs. The multivariate model that confirmed patients with HIV or DM had better experience than did those with rheumatic diseases. CONCLUSIONS: Through IEXPAC, patients identified aspects for healthcare quality improvements and circumstances associated with better experience, which may permit greater redirection of healthcare toward patient-centered goals while facilitating improvements in social care and long-term healthcare quality.

Enacted and internalized stigma and quality of life among people with HIV: the role of group identity.

PURPOSE: This study analyzes the mediating role of social identity in the relationship between enacted stigma and internalized stigma and quality of life of people with HIV. METHODS: A total of 557 people with HIV participated in this study. Participants were recruited from hospitals and non-governmental organizations. Questionnaires measuring perceived stigma (Berger's HIV Stigma Scale), social identity (Cameron's three factor identity scale), and quality of life (Ruiz and Baca's Quality of Life Questionnaire) were administered. The instruments were adapted for use with the Spanish population. Structural equation modeling (SEM) was used to test the mediation model, and multigroup SEM was conducted to evaluate its invariance. RESULTS: Both enacted stigma and internalized stigma had a negative influence on the quality of life of people with HIV, but this influence occurred in different ways. Enacted stigma had a direct negative influence on quality of life. No dimension of group identity protected people with HIV from its negative influence. However, the negative influence of internalized stigma was totally mediated by some dimensions of group identification, mainly through in-group affect. CONCLUSIONS: Group identification not only did not protect people with HIV from the negative effects of stigmatization, but it may even be detrimental in the case of internalized stigma. This suggests that in highly stigmatized groups, the salience of identity is negative and worsens the members' opinion of their own group. This argues for different kinds of intervention to improve the quality of life of people with HIV.