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Background
In order to optimally benefit from HIV care and treatment, HIV-infected individuals must complete several steps along a care continuum – HIV testing and diagnosis, linkage to and retention in primary HIV care, and receipt and adherence to antiretroviral therapy (ART). Retention in care is essential in this process, providing opportunities to monitor response to HIV therapy, prevent HIV-associated complications, and deliver ancillary services. Moreover, retention in care improves survival and reduces the risk of HIV transmission to others. Despite these advantages, only 50–75 % of HIV-infected individuals in the United States (U.S.) linked to care meet national retention in care standards (e.g. completion of two or more HIV primary care appointments per year).
Multiple cohort and survey studies have examined predictors of retention in care, noting that younger age, male sex, black race/ethnicity, and use of intravenous drugs are associated with poor retention. Conversely, patients receiving case management services and individuals with fewer unmet needs are more likely to consistently engage in care than their counterparts. However, these studies are limited by the type of information available in medical records and collected in questionnaires, primarily emphasizing demographic and clinical characteristics. To better understand the full range of factors impacting retention in care, a more qualitative approach is needed.
Some qualitative studies have examined patient-reported barriers and facilitators to retention in care. On the patient-level, concerns about privacy, avoidance and disbelief of HIV serostatus, ability to cope with HIV stigma, and substance use have been identified as barriers. Patients also described clinic-level barriers such as transportation problems and lack of clinic staff to consistently answer and return phone calls. Facilitators to engagement in care included positive relationships with healthcare providers and a strong social support system. Certain qualitative studies additionally focused on specific populations, such as women of color and those living in rural areas. Patient-reported barriers to care in these populations included substance use, depression, stigma, and competing life activities such as family responsibilities and work schedules. Similar to other studies, facilitators to care included having a positive patient/provider relationship and access to transportation.
Our study adds to prior literature by identifying barriers and facilitators to retention in care using contemporary data collected from a diverse population of HIV-infected individuals. Uniquely, we investigate and compare the experiences of patients who are retained and not retained in care to better understand the differences between these groups, including both the number and type of barriers and facilitators to retention in care they report.
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