Patients described a variety of factors influencing adherence to their medications for HIV, HTN, and DM. Four main themes emerged: (1) Comorbidities generate concern and frustration, sometimes eclipsing concern regarding HIV (2) Understanding of health conditions and medications promotes adherence, (3) Simpler regimens with fewer side effects promote adherence, and (4) Untreated substance abuse and mental health issues hinder adherence.
It appears that patients’ experiences with HIV, DM, and HTN shaped their perceptions of the importance of the illnesses. They described concerns regarding the adverse consequences of uncontrolled DM and HTN, incorporating information from their experiences with family members and from advice given by their medical providers. Now that it is possible to control HIV with ART, most patients actively engaged in HIV care are able to achieve and maintain an undetectable HIV RNA [9
]. Current estimates are that 75 – 79% of individuals maintain an undetectable HIV RNA [11
], with characteristics of the patient, regimen, clinical setting, and patient/provider relationship potentially limiting adherence [13
]. However, when HIV suppression is achieved, patients and providers are able to shift their focus to addressing other chronic conditions like DM and HTN. However, unlike HIV, these other conditions may not be controlled through medication therapy alone. They often entail additional self-care activities (shopping for healthy food, exercising, etc.) that require specific knowledge and skills that can be very time-intensive [14
]. In attempting to balance multiple health-related and non-health-related competing demands, patients may not be able to devote the time and resources necessary to control their comorbid conditions. Many participants in our groups, particularly those who had well-controlled HIV, expressed frustration that their DM or HTN was difficult to control despite trying to follow their provider’s recommendations.
Factors contributing to non-adherence include poor understanding of both a medication regimen and of the relationship between antiretroviral non-adherence and antiretroviral resistance [15
]. Most of our participants described the importance of taking their medications as prescribed. However, those who had experienced HIV-related illness or physical manifestations of DM or HTN mentioned those episodes as particularly strong motivators of adherence.
Better medication adherence has been seen among individuals previously diagnosed with an AIDS-defining opportunistic infection [18
] or with more advanced HIV [19
] in earlier studies. However, more recent studies either did not examine AIDS-defining diagnosis as an HIV medication adherence predictor [20
] or did not find an association [21
]. Among hypertensive patients, the belief that variations in blood pressure are symptomatic is related to both better adherence with antihypertensive agents and blood pressure control [22
]. However, many chronic conditions are asymptomatic, and treatment of these chronic conditions is primarily to prevent long-term morbidity and mortality, not for short-term quality of life improvement [23
] or symptom relief. For patients who have not had symptomatic AIDS or experienced symptoms from their HTN or DM, providers must emphasize the importance of treatment for long-term risk reduction even in the absence of symptoms. Patients act on their beliefs and adhere to medications that help them meet their goals [24
]. One potential approach [25
] is for providers to align the patient’s beliefs about the identity (symptoms), causes, timeline, control, and consequences of their illness with medical knowledge. In this way, patients will develop an adaptive understanding of their illness, allowing for more productive self-management.
Additional factors reported as affecting adherence were regimen pill burden/regimen complexity and presence of side effects. For some of our focus group participants, the burden of non-antiretroviral regimens was higher than the burden of antiretroviral regimens. Krentz and colleagues [26
] attempted to quantify the burden of non-antiretroviral therapy in people with HIV, examining patterns of antiretroviral and non-antiretroviral use among HIV clinic patients over time (1990–2010). They found that after peaking in 1998 at a mean of 12.1 pills per day, the mean number of pills per day in 2010 was 6.7, with 22% of all patients taking more than 10 pills per day, and antiretrovirals accounting for 40-50% of total pill burden. In that study, the highest pill burden was among older patients with longer duration of HIV. As patients with HIV age and have additional comorbidities, the number of daily medications they use will increase, which poses a challenge to continued adherence to all medications.
Finally, participants described how untreated mental health and substance abuse issues affected their medication adherence, both to antiretroviral and non-antiretroviral medications. Depression has consistently been associated with medication nonadherence, not following advice from providers, and missing appointments [27
]. Thus, identifying and treating depression is a crucial first step in controlling HIV, which is dependent on medication adherence, and controlling other comorbidities, which depends not only on medication adherence but also on developing a therapeutic alliance and instituting lifestyle changes. Substance abuse has also been associated with antiretroviral nonadherence in several large prospective studies in HIV-positive patients [29
]. Our findings suggest that patients were not adherent to any of their medications when their substance abuse was not controlled, emphasizing the need for effective substance abuse treatment for improving overall health outcomes.
Our data adds to the limited data regarding treatment adherence in patients with HIV and DM or HTN. In a recent study by Batchelder and colleagues of patients with both HIV and DM [8
], patients reported better adherence to their antiretroviral medications compared with their DM medications, which was not reported by our study participants. Another finding from the Batchelder study was that DM symptom burden was associated with non-adherence to DM medications. Similarly, our participants described increased HTN-related symptoms when they did not adhere to their antihypertensive medications. Additional findings from the Batchelder study, specifically that concerns regarding antiretroviral side effects and presence of depression were negatively associated with antiretroviral medication adherence, were similar to our results. The authors did not find an association between concerns regarding DM medication side effects or presence of depression with DM medication adherence. They did not collect information regarding substance abuse.
The major limitation of our study is that there is limited generalizability. Qualitative research collects detailed information from a small group, and therefore our findings may not be applicable on a larger scale. The sample was drawn from a single clinic and the participants were racially homogenous (almost entirely African-American). Although more input from members of other racial groups may have provided different insights, the burden of HIV in the United States is disproportionately borne by African-Americans, who represent 14% of the U.S. population but 46% of people living with HIV [31
]. African-Americans also have higher rates of DM and HTN, and develop HTN earlier in life [32
]. Therefore, exploring the perspectives of African-Americans facing HIV and other chronic comorbidities is particularly relevant to the design of future interventions targeting these issues. The median duration of the relationship with the care provider among study participants was five years. Establishment of a strong long-term relationship with a care provider fosters good adherence [34
], and our results may have been different if the participants had a shorter relationship duration with their providers.
The major strength of our study is that it is an examination of the intersection of HIV management and comorbidity management. As patients with HIV live longer and experience chronic comorbidities in addition to HIV, these other comorbidities may contribute more to morbidity and mortality than HIV itself, but control is of other comorbidities is often elusive. This research adds to the literature by bringing patients’ voices to the table, which will aid in future intervention design to optimize comorbidity management among individuals with HIV.