Abstract
Background
Cardiometabolic diseases have become a major cause of morbidity and mortality for people living with HIV (PLWH), and it is not clear if this population is aware of such risk.
Objective
The objective of this study is to assess perceived knowledge of cardiometabolic risk among PLWH in an underrepresented US community and explore associations with key demographic characteristics and social determinants of health.
Methods
This study was conducted in urban communities within New Jersey. One-hundred and sixteen participants completed the survey, who were included in the final analytic sample.
Results/Conclusion
Approximately half of the participants reported being knowledgeable about the long-term effects of hyperlipidemia and diabetes (51.8% and 51.9%, respectively), and 61.6% of participants reported being knowledgeable about the long-term complications of hypertension. An exploratory analysis was conducted to determine if there were any associations related to reported social determinants of health and the primary outcome.
Plain Language Summary
Cardiometabolic diseases have become a major cause of sickness and death for people living with HIV. Comorbidities such as heart attacks and heart failure (HF) are doubled in risk in people living with HIV; it is not clear whether people living with HIV are aware of such risk. The objective of this study was to identify whether people living with HIV are aware of their risk of heart disease. This study was done surveying urban communities within New Jersey, focusing on obtaining information from historically underrepresented populations. Overall, nearly 50% of patients agreed or strongly agreed to knowing the long-term effects of uncontrolled blood sugar, high blood pressure, and high cholesterol. We also assessed known risk based on age, race, and gender. Further research should assess opportunities to empower individuals to be their healthiest selves, looking beyond antiretroviral medical care.
Introduction
Cardiometabolic diseases have become a major cause of morbidity and mortality for people living with HIV (PLWH). 1 Although advances in HIV treatment have increased the life expectancy of PLWH, cardiometabolic diseases are being diagnosed at an earlier age, relative to people living without HIV. 2 These conditions have been a barrier to narrowing the mortality gap between those living with HIV on antiretroviral therapy (ART) and the general population. 3 There are different age-related comorbidities, such as atherosclerotic cardiovascular disease (ASCVD) and metabolic complications (including insulin resistance, dyslipidemia, and metabolic syndrome). These cardiometabolic conditions disproportionately affect PLWH due to factors such as chronic inflammation, immune activation, metabolic contributors, certain ARTs, and other disease states such as hypertension and nicotine dependence. 1 Recent data suggests people with HIV have less comorbidity-free years, and as such, they are living with the burden of cardiometabolic diseases for longer compared to people living without HIV. 2
Known risk for cardiometabolic diseases in PLWH can also intersect based on gender, race/ethnicity, and age. Women, younger adults, and Non-Hispanic Black individuals with HIV are (at times) 50% more likely to develop strokes compared to the general population. 4 Sex may impact risk due to factors such as sex hormone production and higher systemic inflammation or vascular function. Disparities in cardiovascular diseases among racial groups have also been observed. For example, Black Americans are known to have higher rates of hypertension, the Mexican population in the United States has the highest rate of metabolic syndrome compared to other racial/ethnic groups, and Asian Americans have a higher prevalence of coronary artery disease (CAD) earlier in life. 5 The intersectionality of these factors contribute to the increased risk of cardiometabolic disease in PLWH. Diabetes, hypertension, and hyperlipidemia are the primary cardiometabolic diseases seen and clinically treated among PLWH and the general population. To improve the lives and life expectancy of patients, HIV care clinicians must now focus on primary care best-practices, such as improving therapeutic lifestyle changes (i.e., changes in diet and exercise tolerance), improving health literacy, and optimizing therapeutic strategies for HIV management and cardiometabolic comorbidities. 6
Although few studies have explored knowledge or perceptions of cardiometabolic risk among PLWH, there remains a significant gap in the literature on this topic.7–9 There is a lack of data on how older individuals with HIV perceive cardiovascular risk in the context of the current ART era. A study by Webel and colleagues found that HIV status did not influence ASCVD risk perceptions among a cohort of older Black males (> 50 years of age) at a single site in the United States. This study also showed how barriers to care (ie, access to facilities, food, and medications) can exist in PLWH. 8 Additionally, few studies have examined risk perception within historically marginalized communities in the United States.
There is a growing recognition that social determinants of health (SDOH) impact clinical outcomes for HIV treatment and cardiometabolic diseases. SDOH encompasses the conditions in which people are born, live, work, play, worship, and age—factors that impact a wide range of health outcomes and risks. These determinants include, but are not limited to, health literacy, financial security, food access, transportation, and housing. To more effectively improve clinical outcomes, a better understanding is needed of how SDOH can impede treatment strategies for HIV and cardiometabolic disease.
There is a need to better understand the level of a patient’s knowledge regarding cardiometabolic diseases for PLWH. Knowledge or understanding of long-term health effects of cardiometabolic comorbidities may be a prerequisite for patients to be engaged in the management of these conditions. If providers are aware of this knowledge gap, they can target efforts to further educate and address the needs of patients. The objective of this study is to assess perceived knowledge and awareness of cardiometabolic risk among PLWH in an underrepresented US community and explore associations with key demographic characteristics and SDOH.
Materials and Methods
Study Design and Setting
This was a multicenter, cross-sectional study of people with HIV over 17 years of age that sought services at a community-based, Ryan White-funded organization, which only serves PLWH in New Jersey. The reporting of this study conforms to the STROBE guidelines.
Participants
A survey was offered to clients at the organization's New Jersey (USA) locations based on community health worker (CHW) interest and availability. Any individual who was engaged to care with the organization was able to take the survey during the survey period. Any patients who were eligible were approached by the CHW for this survey. There were no limitations or exclusions (age, race, gender/ethnicity) to the participants of this survey. The number of participants was based on a convenience sample. Given feedback from the CHWs and organization representatives of survey questions being in Spanish, translation services were also provided by the CHWs. Written informed consent was required from all participants to proceed with the survey. The study protocol was approved by the respective institutional review boards. All data was anonymized.
Survey
The survey was conducted electronically via Qualtrics, an online, electronic, anonymized survey tool. The survey was available for participants to complete from January 2021 to January 2022. Individuals were informed about the study at participating locations for completion through a link provided by text or a flyer. When participants were unable to complete the survey on their own electronically, CHWs would assist in the completion of the survey at the site. Paper surveys were provided if patients did not have access to the online surveys. The estimated average time to complete the survey was 15 minutes. The survey primarily assessed participants’ perception of the long-term effects of cardiometabolic diseases (Table 1). In addition to demographic information, the survey also included select SDOH, inquiring about access to food, transportation for health care needs, and housing stability (Table 2). Individuals with cardiometabolic conditions were asked additional questions on treatment and medication adherence. Knowledge gaps were assessed using a Likert rating scale of “strongly disagree”, “disagree”, “neutral”, “agree”, and “strongly agree”. Surveys that were incomplete (i.e., did not answer primary questions that were needed in the primary data analysis) were excluded from the results of this study. All participants received a monetary incentive (20 USD gift card) for completing the survey. The survey utilized for this study was not based on a previously published survey. This survey was developed with interdisciplinary perspectives from patient advocates, HIV clinicians, clinical pharmacists, CHWs, and administration. Questions were developed to meet the study objective while also highlighting the needs of this community. Literacy considerations were addressed with the assistance of CHWs.
Survey Questionnaire (Questions Pertaining to Cardiometabolic Disease).
Survey Questionnaire (Questions Pertaining to Social Determinants of Health).
Statistical Analysis
Descriptive and inferential statistics were performed. Mean and standard deviation or median and interquartile range were reported for continuous variables such as age based on normality of distribution, whereas categorical variables such as race/ethnicity, or gender identity were summarized using frequencies and percentages. Fisher's exact test or Chi-square test was used to analyze and stratify the outcome variable by predictor variables of interest. Bivariate analysis of the question responses was stratified by select variables, including age (continuous and dichotomized at 50 years of age), gender identity, and race and/or ethnicity. A sample size calculation was not done in this study, as we wanted to include as many participants as possible, and this was a very specific patient population that was being studied. The primary outcome for this study included the percentage of patients who reported knowledge of the long-term effects of cardiometabolic comorbidities, specifically knowledge (i.e., agree or strongly agree in the Likert scale) or lack thereof (i.e., neutral or disagree/strongly disagree) of the long-term effects of uncontrolled diabetes, hypertension, and/or hyperlipidemia. A descriptive analysis of patient demographics and select parameters pertaining to SDOH were also performed. Primary outcome variables were trichotomized into agree (strongly agree and agree), neutral, and disagree (disagree and strongly disagree) to find their association with studied demographics (which included race, age groups, and gender).
An exploratory bivariate analysis was performed to assess the associations between specified SDOH and reported knowledge of long-term effects of cardiometabolic diseases. Those who responded, “large supermarket chains” were their primary source of food, were identified as having “food security.” Those who responded “stable” as their current housing situation were identified as having “housing security.” Those who responded “walk”, “bus”, “drive”, or “ride sharing service (ie, Via, Uber, Lyft)” as their mode of transportation to doctor's visits were identified as having “transportation security” (Table 2). Statistical analysis was performed with SAS software version 9.4 (SAS Institute, Cary, NC, USA).
Results
There were 135 surveys that were initiated and 116 participants completed responses, which were included in the final analytic sample. One of the three sites was unable to recruit participants compared to the other 2 sites, due to logistical limitations. The mean age was 53 years of age. Fifty-seven participants (50.4%) identified as cisgender female, and 8 participants (6.9%) identified as transgender female or transgender male or genderqueer. The most reported racial or ethnic identity was non-Hispanic Black (70 participants—62.1%), followed by Hispanic (24 participants—21.4%). Seventy-four (66.6%) participants reported taking medication for hypertension, hyperlipidemia, or diabetes, with half reporting a diagnosis of hypertension and about 30% reporting hyperlipidemia or diabetes. One in eight patients (14.2%) reported a hospitalization within the past year. Approximately half of the participants reported being knowledgeable (responded strongly agree or agree) about the long-term effects of hyperlipidemia and diabetes (51.8% and 51.9%, respectively), and 61.6% of participants reported being knowledgeable about the long-term complications of hypertension (Figure 1). The largest proportion of respondents reported a lack of knowledge on the long-term effects of hyperlipidemia (28%) (Figure 1; Table 3).

Primary outcome. This figure depicts the primary outcome of participants who reported knowledge of the long-term effects of hyperlipidemia, hypertension, and diabetes (N = 116).
Baseline Characteristics.
*Continuous variables reported as mean (SD).
**Categorical variables reported as frequency n (%).
Of note, 3 individuals did not disclose their gender.
Primary Outcome Stratified by Demographics (Age, Gender, Race/Ethnicity)
When stratified by race and ethnicity, two-thirds (65.7%) of non-Hispanic Black participants endorsed that they knew about the effects of uncontrolled hypertension, compared to 58.3% of non-Hispanic White and 50% of Hispanic participants (Figure 2). Two-thirds of participants over the age of 50 reported knowing the effects of hypertension compared to 55% of individuals younger than 50 years of age (Figure 3). Cisgender males and females had comparable responses to the question on knowledge of the long-term effects of uncontrolled hyperlipidemia (Figure 4). Reported knowledge differed among sexual minorities depending on the condition. [Knowledge outcomes stratified by social determinants of health]

Stratification by reported race and ethnicity. This figure depicts the primary outcome of participants who reported knowledge of the long-term effects of hyperlipidemia, hypertension, and diabetes, stratified by reported race/ethnicity: White, Non-Hispanic (N = 12), Black, Non-Hispanic (N = 70), Hispanic (N = 24), Asian (N = 3), and Other (N = 3). *P-values represent the comparison of the categorical response by race and ethnicity.

Stratification by reported age. This figure depicts the primary outcome of participants who reported knowledge of the long-term effects of hyperlipidemia, hypertension, and diabetes, stratified by reported age: ages 18-50 (N = 31) and ages >50 (N = 60). P-values represent the comparison of the categorical response by age (18-50 years and >50 years).

Stratification by reported gender identity. This figure depicts the primary outcome of participants who reported knowledge of the long-term effects of hyperlipidemia, hypertension, and diabetes, stratified by reported gender identity: Cisgender male (N = 48), cisgender female (N = 57), and gender minority (N = 8). P-values represent the comparison of the categorical response by reported gender identity. **Gender minority includes those who were identified as Transgender women, Transgender men, and Gender queer.
Most participants accessed food from large supermarket chains (65.5%), used the bus as their main mode of transportation for healthcare visits (44%), and had stable housing (73.2%; Table 4). An exploratory analysis examined any associations related to reported SDOH and reported knowledge of the long-term effects of cardiometabolic diseases. Sixty-eight percent of patients who reported having food security reported knowledge of the long-term effects of hypertension compared to 35% who did not report food security (P < .001). Additionally, 57% of patients who reported having food security reported knowledge of the long-term effects of diabetes compared to 33% who did not report food security (P = .014).
Identified Social Determinants of Health.
**Categorical variables reported as frequency n (%).
Discussion
This study assessed perceived knowledge on cardiometabolic risk in PLWH within a group of underrepresented communities in New Jersey, USA. A substantial portion of the cohort did not report being knowledgeable regarding the long-term effects of cardiometabolic conditions, specifically hypertension, hyperlipidemia, and diabetes. Only approximately half of the younger strata within our cohort (18-50 years of age) reported being knowledgeable about the long-term effects of hypertension, hyperlipidemia, and diabetes. Younger patients living with HIV are experiencing cardiometabolic comorbidities earlier in life, with a significant portion diagnosed with hypertension, diabetes, or hyperlipidemia in their 30's and 40's. 2 While our results cannot be extrapolated across all populations, it provides insight into the need to further evaluate knowledge, understanding, and risk perception for cardiometabolic diseases, given the increased prevalence earlier in life for PLWH.
There are limited studies that assess knowledge of cardiometabolic diseases, particularly in younger adults with HIV. In a study of PLWH in a single site in a U.S. city, examining knowledge perception of these comorbidities, the mean age was 39.7 years. Perception was measured with a Likert scale (1-4) and was totaled at the end. The higher the score, the more the participant perceived there would be a higher impact on ASCVD risk. They did not find any differences in perceived susceptibility or severity to ASCVD. Perceived susceptibility to CVD for PLWH was 10.0 compared to 9.7 of those who do not live with HIV (P = .56). 8 Although in a different setting, these results are consistent with our study, emphasizing the limited knowledge of cardiometabolic diseases in a younger PLWH population. Awareness of these cardiometabolic diseases in the younger population living with HIV should be emphasized.
When assessing gender as a predictor of cardiometabolic disease knowledge, those who identified as “gender minority” (defined as transgender women, transgender men, and gender queer) showed lower knowledge of the long-term effects of hypertension and diabetes. Data are limited regarding those who identify as a gender minority, but even more so with a diagnosis of HIV. In a narrative review (not specific to HIV) of sexual orientation, gender identity, and cardiometabolic risk, there is some indication of increased risk of CVD for transgender adults. More data, especially at the intersection of HIV and gender minority populations, are needed to accurately assess risk and develop risk mitigation strategies. 10
A number of participants in our study conveyed having barriers to stable housing, transportation, and food security. The relationship between SDOH and comorbidities in historically marginalized PLWH has been studied.9,11 Food insecurity in the general population has been associated with cardiovascular and all-cause mortality in adults in the United States, consistently presenting as a leading public health challenge.12,13 When food insecurity is then considered in PLWH, this additionally leads to a lower likelihood of patients remaining engaged in HIV care. 12 In our exploratory analysis, participants who reported food security were associated with a higher rate of knowledge of the long-term effects of uncontrolled hypertension and diabetes. This aligns with how food insecurity can negatively impact the management of cardiovascular diseases.12,14 Although there are data to emphasize the impact on how food insecurity can affect cardiometabolic diseases, further research should examine the intersectionality and increased risk in PLWH.
Limitations
There were several limitations with this study. This was a descriptive study without a formal sample size calculation. Its cross-sectional design could not capture evolving beliefs over time. The length of the survey, 37 questions, may have contributed to response bias; participants might have answered what was most convenient, as opposed to what they truly felt and wanted to respond to. There is also risk for recall bias as some of the questions explored medication history; it is limited to the ability of the participant to recall this specific information. There is also selection bias, as we surveyed a specific patient population within 2 locations, which limits the external validity of this study. The survey did not ask participants which site they were completing the survey with, as both sites were in urban communities in highly populated cities (within the state of New Jersey). A formal sample size calculation was not done because first, this was a descriptive study and second, there are limited data exploring this topic directly to base any sample size calculation on. The goal was to also provide perspective on a historically marginalized patient population in the current ART era, where virologic control is the norm among individuals engaged in care, and patients are succumbing to non-HIV-related morbidity and mortality. Although the survey was developed by an interdisciplinary team, it was not formally validated.
Additionally, digital literacy and access to resources were limitations, but can also be viewed as a strength. For participants who did not have the ability to complete the survey electronically, CHWs were able to assist by providing them with an electronic means at the community location, or they were also able to complete the survey on paper. Resources were provided (despite the potential impact on the results of the study) in order to better accommodate this specific patient population that may not otherwise be captured. In settings where there were language barriers, limited access to electronic methods, or limited health literacy, we tried to accommodate with resources from our CHW's.
Despite limitations noted, this study contributes data from populations not typically represented in these types of studies (i.e., older Black and Hispanic persons living with HIV, transgender persons with HIV). Other studies attempt to quantify the burden of cardiometabolic diseases, but few investigate how individuals understand and perceive their own risk.1,2,15 Our study aimed to address this gap by exploring patients’ awareness and perceptions, offering insight into the lived experiences of people with HIV as related to cardiometabolic health.
The results of this study also assisted in creating a community outreach and education event for the people of this community, specifically targeting topics that were determined to be gaps in knowledge. This event consisted of an educational seminar that focused on the results of the study. The presentation explained how PLWH are at increased risk of cardiometabolic diseases. In addition to the educational seminar, student pharmacists also participated and volunteered to educate participants. Education was done with large tri-fold poster boards, each one consisting of a “game” to better engage with patrons and also inform them on topics such as nutrition fact labels, cardiometabolic risk, and important lifestyle recommendations when living with chronic conditions. The aim of this outreach is to continue to have this health fair and to continue to engage with patrons of the community on an important yet undervalued topic.
Interpretation
This study aimed to provide more insight into PLWH and their perceived cardiometabolic risk. Our findings highlight the need for healthcare workers who care for persons living with HIV to be better prepared and more focused on chronic disease states and aging during interactions and when developing initiatives. There is a shift in practice that potentially includes the consideration of age-related comorbidities, providing holistic care, and not only focusing on HIV-associated objective data such as their viral load and CD4 count. This also emphasizes the importance of engaging with a community and community resources when caring for people with HIV. Future studies would benefit from exploring perceptions related to a broader range of cardiometabolic conditions, such as obesity, CAD, and peripheral artery disease. This would allow for a more comprehensive understanding of the comorbidities affecting this patient population.
Conclusion/Generalizability
Improving perceived and actual knowledge of the long-term effects of cardiometabolic conditions on the lives of people with HIV should be a top priority. Developing and implementing initiatives to further educate this patient population will be an important component of strategies to reduce morbidity and mortality. Interventions and programs can be carried out by community-based organizations, healthcare systems, including community pharmacies, implementation of the multidisciplinary team, and continually engaging with community partners. Additionally, health policies may also need to address better education and awareness of cardiovascular comorbidities to further close the gap on these health inequities. Further studies need to also evaluate the impact of new medications and therapeutic modalities have on our specific population, and advocate for access when they are proven effective. Studies implementing an intersectionality approach to better understand how key demographics such as age and gender identity interact in this context of HIV and cardiometabolic disease. The end of our analysis resulted in an educational symposium for PLWH with the community, focusing on the knowledge gaps identified in this study. Further work should assess opportunities to empower individuals to be their healthiest selves, looking beyond antiretroviral medical care.
Supplemental Material
sj-docx-1-jia-10.1177_23259582261444789 - Supplemental material for Are People With HIV Aware of Their Cardiometabolic Risk? A Cross-Sectional Survey Study of People Living With HIV Within a Community Organization in an Urban Setting
Supplemental material, sj-docx-1-jia-10.1177_23259582261444789 for Are People With HIV Aware of Their Cardiometabolic Risk? A Cross-Sectional Survey Study of People Living With HIV Within a Community Organization in an Urban Setting by Christine Ann (Dimaculangan) Parikh, Brijesh Rana, Navaneeth Narayanan and Humberto R. Jimenez in Journal of the International Association of Providers of AIDS Care (JIAPAC)
Footnotes
Acknowledgments
We would like to acknowledge the collaboration with the Hyacinth AIDS Foundation in conducting this research, notably Dr. Maria Szabela and Jodi Riccardi.
Ethical Approval and Informed Consent
The study involving human participants was reviewed and approved by the Ethics Committee of Rutgers University (#Pro2020002210). Written informed consent was required from all participants, and all data were anonymized.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this study was funded by an institution-specific pilot community health equity grant.
Declaration of Conflicting Interests
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Brijesh Rana and Navaneeth Narayanan have no relevant financial or non-financial interests to disclose. Humberto Jimenez reports lecture/speaker fees from Gilead Sciences, Inc. Christine Ann (Dimaculangan) Parikh reports lecture/speaker fees from ViiV Healthcare.
Data Availability
Data are available upon request to the principal study investigator (C. Parikh).
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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