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Abstract

Achieving viral suppression alone does not fully resolve the multifaceted health challenges faced by people with HIV (PWH), such as early aging, multimorbidity, and low health-related quality of life. This co-creation pilot study to investigate patient-centered metrics for long-term well-being involved the development of a knowledge, attitudes, and practices survey through focus groups and its implementation among HIV care providers in Barcelona, Spain, in 2024. A collaborative approach of involving PWH from the community was essential in ensuring the relevance of the identified issues. The results underscored the importance of monitoring comorbidities such as mental health issues, cardiovascular diseases, and neurological disorders, alongside the use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The findings highlighted several barriers to implementing PROMs, including time constraints, patient health literacy, and technical issues. Overall, the study emphasizes the need for health systems in Barcelona, Spain, to integrate PROMs and PREMs into routine HIV care to enhance patient-centered care and address the comprehensive well-being of PWH.

Introduction

In 2014, the Joint United Nations Programme on HIV and AIDS (UNAIDS) introduced the “90–90–90” targets: diagnose 90% of people with HIV (PWH), provide antiretroviral therapy (ART) to 90% of those diagnosed, and achieve viral suppression in 90% of those on ART.¹ Although ART access is widespread, it is not accessible to all PWH in all settings, and these targets do not address major challenges facing PWH even once viral suppression is achieved, such as a high burden of multimorbidity and concomitant polypharmacy, which typically increases with age, and ongoing HIV-related stigma and discrimination.^2,3 These, and other factors, can worsen PWH’s health-related quality of life (HRQoL), which is lower than the general population’s in some settings,⁴ yet health systems have been slow to reorient themselves to the challenge of promoting better HRQoL in PWH.⁵

PWH still often face major health challenges and experience poor HRQoL, even when they respond well to ART.⁴ For instance, virally suppressed PWH have high rates of multimorbidity and related burdensome health issues, such as polypharmacy and frailty,^6
–8 and face HIV-related discrimination.⁹ Lower HRQoL scores have predicted all-cause hospitalization,¹⁰ mortality, emergency department utilization, and hospital discharge rates among PWH in the United States.¹¹ Increased life expectancy due to ART presents health systems with a new challenge in managing comorbidities associated with long-term survival, as psychosocial factors may outweigh medical factors in determining HRQoL.¹² Yet, health systems are largely unprepared to manage the breadth of burdensome problems of increasingly aging PWH.^2,5,13

Person-centeredness, or prioritizing the values, needs, and preferences of patients, has become the third pillar of health care quality, in addition to effectiveness and safety.^14,15 There is a strong association between positive patient experience and the quality of care.^16
–18 Therefore, understanding and giving priority to the patient experience is integral to achieving patient involvement and people-centered collaborative health care. Patient-reported outcome measures (PROMs) are means to retrieve information on patient experience and provide high-value evidence that is useful for informing health care service governance decision-making, clinical care delivery, and health research.^19,20

By focusing on viral suppression as the end goal of HIV care, the public health science that drives health system decisions lacks the framework and tools needed to adequately study the full health and well-being of a cadre of people already engaged in care. Without extending HIV monitoring to issues beyond viral suppression, the diminished HRQoL of PWH cannot be adequately investigated, let alone addressed. This study aims to co-define with PWH receiving care in Barcelona, Spain, important patient-reported issues to monitor beyond viral suppression.

Methods

Study design

This pilot study employed a co-production patient-centered collaborative research design, consisting of three main phases. In the first phase, local HIV partner associations and PWH underwent training to engage as co-researchers in defining research questions and methods. This training aimed to empower participants and ensure that the research is aligned with their needs and values. The second phase involved the co-creation of a knowledge, attitudes, and practices (KAP) survey. This survey, developed through focus group discussions with community collaborators who were HIV-positive, focused on key elements of long-term well-being, including comorbidities, PROMs, and patient-reported experience measures (PREMs). The final phase included the implementation and analysis of the KAP survey completed by health care providers in Barcelona-area hospitals. The results were jointly analyzed in a focus group open to participating health care providers and community collaborators. Together, these participants co-created a community well-being informational brochure for PWH.

Participants

Participants in the Participatory and HIV Outcomes-Driven Experience Research (PODER) study included HIV-positive community collaborators and medical professionals from hospitals in the Barcelona metropolitan area. Recruitment for community collaborators was conducted through Gais Positius, a local organization serving the lesbian, gay, bisexual, transgender, queer (LGBTQ+) community. Community collaborators in the study must have been HIV-positive adults receiving or eligible for HIV care in Barcelona, Spain. Three individuals were recruited from the community. Medical professionals were recruited through the professional networks of the researchers by email invitation to the heads of infectious disease clinics at Hospital del Mar, Hospital Clinic, Hospital San Pau, and Hospital Val d’Hebron; participants must have currently been providing health care to PWH in the Barcelona metropolitan area at the time of recruitment. Ten health care providers were recruited. This inclusion criterion ensured that participants had relevant experience and insights into the challenges and needs of HIV care, both from the patient and provider perspectives.

Data collection

Data collection involved community-based focus groups and the administration of the co-created KAP survey via Qualtrics, a secure online platform that ensures anonymity and compliance with General Data Protection Regulation rules.

The community focus groups were designed to elicit patient-centric issues and/or metrics crucial for monitoring long-term well-being among PWH beyond viral suppression. These focus groups, held on December 19, 2023, January 16, 2024, and February 13, 2024, involved active participation from PWH community members. The discussions led to the co-creation of a comprehensive survey that incorporated these elements, ensuring that the issues developed were truly reflective of the patient population’s needs and priorities. The collaborative nature of this process underscored the value of engaging PWH in research to create more relevant and effective health monitoring tools.

The KAP survey included items on various aspects of HIV care, such as the management of comorbidities and the use of PROMs and PREMs, derived from the focus group discussions. Participants provided their responses to items related to their experiences and practices in HIV care. Two focus groups were held on May 27 and 28, 2024, to review the survey results with respondents.

Statistical analysis

Descriptive statistics, including frequencies and means, were used to analyze the survey responses and provide a summary of the data, thereby highlighting key trends and insights into the current state of HIV care in Barcelona.

Results

Participants emphasized the significance of monitoring various comorbidities such as mental health issues, cardiovascular diseases, neurological disorders, substance use problems, cancers, bone diseases, kidney diseases, pulmonary diseases, liver diseases, and diabetes (Table 1). They noted that these conditions often coexist with HIV and significantly impact the quality of life (QoL) of PWH. Participants also stressed the need for PROMs and PREMs to capture the broader aspects of health and well-being beyond viral suppression (Table 2). PROMs were identified as essential tools for understanding the impact of HIV and its treatment on patients’ overall health and daily functioning. PREMs were highlighted for their role in assessing patients’ experiences with health care services, including aspects such as time management, quality of contact, participation in decision-making, accessibility to health care professionals, and respect for patient values. Of the ten health care providers invited to participate, five completed the KAP survey. The survey revealed that PROMs and PREMs are considered crucial for personalized HIV care, with 80% of respondents agreeing or strongly agreeing that PROMs contribute positively to the care of PWH (Table 3). However, several challenges were identified in implementing PROMs, including time constraints (60%), patient health literacy (40%), and technical issues related to data management (30%). These barriers highlight the need for improved systems and training to effectively use PROMs in routine care.

Table 1.

Key Comorbidities Identified by Participants

Comorbidity	Description
Mental health issues	Includes depression, anxiety, and other mental health conditions
Cardiovascular diseases	Heart-related conditions such as hypertension and heart disease
Neurological disorders	Conditions affecting the nervous system, including neurodegenerative diseases
Substance use problems	Issues related to the use of drugs, alcohol, or other substances
Cancers	Various forms of cancer, which may be more prevalent or develop differently in PWH
Bone diseases	Includes osteoporosis and other bone-related conditions
Kidney diseases	Chronic kidney disease and other renal issues
Pulmonary diseases	Respiratory conditions, including chronic obstructive pulmonary disease (COPD)
Liver diseases	Liver conditions, including viral hepatitis and cirrhosis
Diabetes	Metabolic disorder characterized by high blood sugar levels

PWH, people with HIV.

Table 2.

Essential PROM and PREM Issues for Monitoring Health and Well-Being

Issue	Description	Measure type
Physical symptoms	Tracking symptoms like pain, fatigue, and other physical health issues	PROM
Cognitive problems	Monitoring issues such as memory loss and concentration difficulties	PROM
Emotional distress	Assessing levels of stress, anxiety, and depression	PROM
Sexual health	Evaluating sexual function and related issues	PROM
Social support	Understanding the support systems available to patients	PROM
Material deprivation	Assessing issues like housing and financial resources	PROM
Sleep/fatigue	Monitoring sleep quality and levels of fatigue	PROM
Time management	Evaluating the efficiency and timeliness of care received	PREM
Quality of contact	Assessing the quality of interactions between patients and health care providers	PREM
Participation in decision-making	Understanding the extent to which patients are involved in their care decisions	PREM
Accessibility to health care professionals	Evaluating ease of access to necessary health care services	PREM
Respect for patient values	Ensuring that care respects patients’ personal values and preferences	PREM
Pain management	Assessing how effectively pain is managed within the care setting	PREM
Emotional support	Evaluating the emotional support provided by health care services	PREM

PREM, patient-reported experience measure; PROM, patient-reported outcome measure.

Table 3.

Knowledge, Attitudes, and Practices (KAP) Survey Results

Survey Item	Responses (n = 5)
PROMs (patient-reported outcome measures)
PROMs contribute positively to the personalized care of PWH	Strongly Agree (50%), Agree (30%), Neutral (10%), Disagree (5%), Strongly Disagree (5%)
Challenges faced in using PROMs (select all that apply):	Time constraints (60%), Patient health literacy (40%), Technical data management issues (30%), Data privacy issues (20%), Cost constraints (15%), Interpretation and actionability of results (25%)
Do you collect any of the following PROMs from PWH in your practice?	Physical symptoms (88%), Cognitive problems (75%), Anticipated stigma (50%), Emotional distress (82%), Sexuality (70%), Social support (78%), Material deprivation (65%), Sleep/fatigue (72%)
PREMs (patient-reported experience measures) (n = 5)
PREMs are crucial in enhancing the quality of HIV care.	Strongly Agree (55%), Agree (30%), Neutral (10%), Disagree (3%), Strongly Disagree (2%)
Do you use feedback from PREMs to initiate changes in your practice or approach towards the care of PWH?	Frequently (70%), Somewhat frequently (20%), Rarely (7%), Never (3%)
Does your hospital have mechanisms for people living with HIV to report any experience of stigma and discrimination in health care settings?	Yes (70%), No (10%), Do not know (20%)
Coordination of care (n = 5)
How do you rate the overall coordination between hospital departments in managing comorbidities of patients with HIV?	1 (lowest) to 5 (highest)—average rating: 2.8
Efficiency in sharing patient information	1 (lowest) to 5 (highest)—average rating: 2.8
Timeliness of consultations between departments	1 (lowest) to 5 (highest)—average rating: 2.8
Effectiveness of joint care planning	1 (lowest) to 5 (highest)—average rating: 2.6
Clarity of communication among departments	1 (lowest) to 5 (highest)—average rating: 2.8
Coordination in the management of comorbidities	1 (lowest) to 5 (highest)—average rating: 2.8

Regarding the coordination of care, KAP survey respondents rated the overall coordination between hospital departments as moderate, with an average score of 2.8 out of 5. Specific aspects such as the efficiency of sharing patient information and the effectiveness of joint care planning received similar ratings, indicating room for improvement. Additionally, 70% of respondents reported having mechanisms in place for PWH to report experiences of stigma and discrimination in health care settings, though 20% were unaware of such mechanisms.

The co-created well-being informational brochure for PWH is presented in Supplementary Data.

Discussion

These findings underscore the need for comprehensive person-centered HIV care that extends beyond achieving viral suppression to also include patient-reported metrics. PROMs identified by participants in this study included physical symptoms, cognitive problems, emotional distress, sexual health, social support, material deprivation, and sleep and fatigue. PREMs identified included time management, quality of contact, participation in decision-making, accessibility to health care professionals, respect for patient values, pain management, and emotional support. Integrating PROMs and PREMs into routine HIV care can provide valuable insights into patient experiences and outcomes and may inform better health care practices and policies. However, addressing barriers such as time constraints, patient health literacy, and technical issues is crucial for the effective use of these measures.^5,20 The moderate ratings for care coordination between hospital departments highlight the necessity for enhanced communication and collaboration to manage comorbidities effectively. Further, addressing stigma and discrimination remains a priority to ensure equitable and respectful care for all PWH.⁴ There was consensus among focus group participants on the benefit of integrated care models, such as those found in multi-disciplinary clinics, to effectively manage multimorbidity and polypharmacy,²¹ thereby enhancing patient outcomes.

Key elements of patient-centered care include empathy, respect, and effective communication, which foster a strong patient-provider relationship and shared decision-making.^16,22 Nevertheless, targeted interventions, such as training for providers in communication and continuity of care, have shown promise in improving outcomes like viral suppression and patient satisfaction.²² HRQoL measurement for PWH is mainly limited to clinical trials and ART adherence and is rarely used in routine clinical practice for issues beyond viral suppression.²³ The clinical use of QoL assessments that primarily focus on ART adherence, while crucial, is insufficient for achieving health parity with the general population.^23,24 Self-reported QoL or HRQoL captures patient experiences like life satisfaction, empowerment, and stigma impact, often overlooked in care settings yet influential on health outcomes.²⁰

In Spain, studies have shown that while ART significantly improves clinical outcomes, there is a critical need to address the quality of care perceived by patients. For instance, the perception of outpatient care at the HIV unit of Hospital Clinic in Barcelona was generally positive, but areas such as the physical environment and waiting times were identified for improvement.²⁵ Additionally, adherence to quality care indicators has been shown to correlate with high patient satisfaction, although this adherence does not always align perfectly with patient-reported satisfaction.²⁶ Our findings align with those from other studies in Spain highlighting the persistent challenges PWH face, including stigma, psychological distress, and physical symptoms.²⁷ For instance, PROMs are essential for understanding how HIV and its treatment affect patients’ overall health and daily functioning, while PREMs assess patients’ experiences with health care services, emphasizing the importance of time management, quality of contact, and participation in decision-making.²⁷ These measures are vital for patient-centered care, as they provide insights into patient experiences that are not typically captured by clinical outcomes alone. The development and validation of a clinic screening tool for HIV (CST-HIV) has identified burdensome health-related issues affecting both clinical and psychosocial aspects of HIV care.²⁸ Self-reported measures highlight issues such as stigma, empowerment, and life satisfaction, which are pivotal for the long-term health and well-being of PWH.²⁶ This suggests that while clinical indicators are important, capturing patient experiences through PROM and PREM tools is essential for truly patient-centered care.

Challenges in the implementation of PROMs and PREMs include varied design methodologies of scales and instruments, which may make it difficult to compare PWH populations, cultural resistance, inadequate IT infrastructure, high implementation costs, competing priorities, staff skill gaps, skepticism about data reliability, patient burden, and issues with instrument length and sensitivity.²⁹ Any of these challenges may hinder health system decision-making based on quality data. The use of telehealth in HIV care can address some of these challenges by reducing stigma-related delays and improving access to care (e.g., flexible virtual appointments), patient satisfaction with care, and use of patient-reported measures (e.g., symptoms or burdensome health issues).³⁰ To maximize these benefits, ensuring privacy, providing low-cost technological resources, enhancing technology proficiency through training, and adopting hybrid approaches to maintain strong clinician-patient relationships are crucial.³⁰

Limitations of this study include selection bias in both the PWH recruited by Gais Positius and health care providers recruited by hospital infectious disease department heads. Additionally, both samples were small and had insufficient sizes to power statistical analysis. Future research should focus on developing and validating HRQoL assessment tools tailored to the specific needs of aging PWH populations. Such tools can help health systems better understand and address the diverse factors influencing the well-being of PWH, ultimately leading to improved health outcomes and QoL. The engagement of health care providers and the HIV community in designing and implementing PROMs and PREMs in routine care can enhance our understanding of the long-term health needs of aging with HIV.

Footnotes

Acknowledgments

J.V.L. and T.M.W. acknowledge institutional support to ISGlobal from grant CEX2023-0001290-S funded by MCIN/AEI/10.13039/501100011033 and the “Generalitat de Catalunya,” through the CERCA program, outside of the submitted work. The project leading to these results has received funding from “la Caixa” Foundation (ID 100010434), under agreement LCF/PR/AR20/51460003.

Authors’ Contributions

J.V.L. oversaw the study design and implementation. T.M.W., A.-S.G., and C.P. oversaw data collection and analysis. J.R. contributed to the study design and participant recruitment. All authors contributed equally to article drafting and editing.

Author Disclosure Statement

J.V.L. has received speaker fees from Gilead Sciences, ViiV, and Merck Sharp & Dohme (MSD) and has received grants from Gilead Sciences outside of the submitted work. All other authors have no competing interests to declare that are relevant to the content of this article.

Funding Statement

This study was funded by Pfizer, Inc., Global Medical Grants, grant number 77583597. Funders had no role in the study design, implementation, or article drafting.

Supplementary Material

Supplementary Data

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Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

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Co-Creation of Patient-Centered Metrics for Long-Term Well-Being Involving People with HIV and HIV Care Providers

Abstract

Introduction

Methods

Study design

Participants

Data collection

Statistical analysis

Results

Discussion

Footnotes

Acknowledgments

Authors’ Contributions

Author Disclosure Statement

Funding Statement

Supplementary Material

References

Supplementary Material