Barriers and Facilitators to Patient Retention in HIV Care
Barriers and Facilitators to Patient Retention in HIV Care
Retention in care is a critical element of the HIV care continuum and is necessary for successfully managing HIV infection. This study adds to the existing literature by examining differences in barriers and facilitators to retention in care for patients with varying retention patterns. Individuals in the retained and non-retained groups expressed common barriers and facilitators to retention in care. However, as a group, non-retained individuals identified more barriers and more often discussed stigma, expensive and unreliable transportation, insufficient health insurance, challenges with appointment scheduling, and difficult relationships with clinic staff as obstacles.
Participants from both groups described common struggles to consistently attending clinic visits, including dealing with competing life priorities (e.g. caring for children or elderly family members), feeling physically sick, and being depressed. Caregivers of chronically ill individuals, particularly in underprivileged populations, may experience substantial economic strains due to lost wages, social isolation, and depressive symptoms. Moreover, studies have shown that caregiver responsibilities may prevent people from attending their own appointments or reaching their own full health potential. The use of new technologies, including secure electronic messaging and videoconferencing, could address some of these barriers by increasing access to care and medical information. However, these modalities have been limited by lack of uptake and integration with our current financial reimbursement systems, privacy concerns, and provider comfort using these technologies. Consistent with other studies, patients who felt sick or depressed were more likely to miss their appointments. Successfully integrating psychiatric and psychosocial treatment into HIV care, when possible, may serve as a tool for improving both retention in care and HIV clinical outcomes.
Participants in the non-retained group more commonly identified stigma, expensive and unreliable transportation, insufficient health insurance, challenges with appointment scheduling, and difficult relationships with clinic staff as barriers to retention in care compared to the retained group. While major advances in the treatment of HIV have been made, negative perceptions and stigma associated with the disease have not evolved as rapidly. Non-retained individuals commonly (high tertile) cited stigma as a barrier compared to retained individuals (middle tertile). This difference may be a consequence of different experiences or varying perceptions of similar experiences between the groups. Patients retained in care may also have stronger social supports or access to mental health care, which have been identified as protective against stigma, than those not retained in care. Additional studies are needed to better understand how patients perceive stigma and its subsequent impact on health behaviors, particularly among individuals with otherwise similar social, economic, and behavior backgrounds and experiences. Interventions, such as skill building through peer coaching, education programs to gain a better understanding of HIV disease, and connecting HIV-infected individuals with community resources and peers, may help patients combat stigma and improve their engagement in healthcare.
Expensive and unreliable transportation was commonly (high tertile) discussed as a barrier in the non-retained group, but was in the middle tertile for the retained group. Differences in income, place of residence, and access to individuals who can provide transportation may explain this finding. Prior studies demonstrate that clinics providing support services, including transportation and case management, have better retention rates than those without these services. Insufficient health insurance was a high tertile barrier for not retained patients and a low tertile barrier for retained individuals, despite both groups having a similar insurance distribution. While both groups had similar insurance patterns, it may be that those retained in care are better able to navigate the healthcare system and use their insurance coverage effectively to obtain care than those not retained.
Challenges with appointment scheduling and difficult relationships with clinic staff were both in the lowest tertile of barriers for the retained group, but in the middle tertile for patients not retained in care. Satisfaction with the clinic experience predicts whether or not patients return for care. Moreover, patients' perception of the clinic experience depends not only on the quality of clinical care delivered but also on interactions with clinic staff, appointment wait times, and scheduling efficiency. Among people living with HIV, satisfaction with care has been shown to be positively associated with retention in care and adherence to ART. Non-retained patients may have been less satisfied with their clinic experience and for that reason did not return for appointments or remain engaged in care. Additional research is needed to better understand the differences between patients retained and not retained in care, since despite similar demographic characteristics between the groups they differed in their perceptions about barriers to care.
Both the retained and non-retained groups commonly (high tertile) mentioned supportive patient-provider/patient-staff relationships, patient-friendly clinic services, and social support as highly important facilitators to retention in care. Studies examining the patient-provider relationship have found that interaction styles that reduce social distance with the patient and improve patient comprehension of health issues lead to improved engagement in HIV care. Similarly, patient-friendly clinic services, such as patient orientation to the clinic or open access scheduling, have been documented to reduce missed appointments. In HIV infection, brief face-to-face meetings with clinic staff upon returning for care, interim visit calls, appointment reminder calls, and missed visit follow-up calls improved visit adherence in a randomized control trial of usual care versus enhanced personal contact.
There are several limitations to this study. Though we were able to recruit a large number of individuals not retained in care, there may be differences in those patients who were unable to be recruited. These patients may be even less engaged in care, and thus may have different barriers and facilitators than participants in this study. Additionally, patients' responses may have been influenced by social desirability bias. Ensuring confidentiality and training interviewers to avoid judgmental reactions helped minimize this risk. Finally, the findings of this study may not generalize to other populations, as our patients, clinical practices, and geographic and cultural environment may vary from others. Moreover, not all barriers and facilitators identified may apply to the same degree across populations and locales.
Discussion
Retention in care is a critical element of the HIV care continuum and is necessary for successfully managing HIV infection. This study adds to the existing literature by examining differences in barriers and facilitators to retention in care for patients with varying retention patterns. Individuals in the retained and non-retained groups expressed common barriers and facilitators to retention in care. However, as a group, non-retained individuals identified more barriers and more often discussed stigma, expensive and unreliable transportation, insufficient health insurance, challenges with appointment scheduling, and difficult relationships with clinic staff as obstacles.
Participants from both groups described common struggles to consistently attending clinic visits, including dealing with competing life priorities (e.g. caring for children or elderly family members), feeling physically sick, and being depressed. Caregivers of chronically ill individuals, particularly in underprivileged populations, may experience substantial economic strains due to lost wages, social isolation, and depressive symptoms. Moreover, studies have shown that caregiver responsibilities may prevent people from attending their own appointments or reaching their own full health potential. The use of new technologies, including secure electronic messaging and videoconferencing, could address some of these barriers by increasing access to care and medical information. However, these modalities have been limited by lack of uptake and integration with our current financial reimbursement systems, privacy concerns, and provider comfort using these technologies. Consistent with other studies, patients who felt sick or depressed were more likely to miss their appointments. Successfully integrating psychiatric and psychosocial treatment into HIV care, when possible, may serve as a tool for improving both retention in care and HIV clinical outcomes.
Participants in the non-retained group more commonly identified stigma, expensive and unreliable transportation, insufficient health insurance, challenges with appointment scheduling, and difficult relationships with clinic staff as barriers to retention in care compared to the retained group. While major advances in the treatment of HIV have been made, negative perceptions and stigma associated with the disease have not evolved as rapidly. Non-retained individuals commonly (high tertile) cited stigma as a barrier compared to retained individuals (middle tertile). This difference may be a consequence of different experiences or varying perceptions of similar experiences between the groups. Patients retained in care may also have stronger social supports or access to mental health care, which have been identified as protective against stigma, than those not retained in care. Additional studies are needed to better understand how patients perceive stigma and its subsequent impact on health behaviors, particularly among individuals with otherwise similar social, economic, and behavior backgrounds and experiences. Interventions, such as skill building through peer coaching, education programs to gain a better understanding of HIV disease, and connecting HIV-infected individuals with community resources and peers, may help patients combat stigma and improve their engagement in healthcare.
Expensive and unreliable transportation was commonly (high tertile) discussed as a barrier in the non-retained group, but was in the middle tertile for the retained group. Differences in income, place of residence, and access to individuals who can provide transportation may explain this finding. Prior studies demonstrate that clinics providing support services, including transportation and case management, have better retention rates than those without these services. Insufficient health insurance was a high tertile barrier for not retained patients and a low tertile barrier for retained individuals, despite both groups having a similar insurance distribution. While both groups had similar insurance patterns, it may be that those retained in care are better able to navigate the healthcare system and use their insurance coverage effectively to obtain care than those not retained.
Challenges with appointment scheduling and difficult relationships with clinic staff were both in the lowest tertile of barriers for the retained group, but in the middle tertile for patients not retained in care. Satisfaction with the clinic experience predicts whether or not patients return for care. Moreover, patients' perception of the clinic experience depends not only on the quality of clinical care delivered but also on interactions with clinic staff, appointment wait times, and scheduling efficiency. Among people living with HIV, satisfaction with care has been shown to be positively associated with retention in care and adherence to ART. Non-retained patients may have been less satisfied with their clinic experience and for that reason did not return for appointments or remain engaged in care. Additional research is needed to better understand the differences between patients retained and not retained in care, since despite similar demographic characteristics between the groups they differed in their perceptions about barriers to care.
Both the retained and non-retained groups commonly (high tertile) mentioned supportive patient-provider/patient-staff relationships, patient-friendly clinic services, and social support as highly important facilitators to retention in care. Studies examining the patient-provider relationship have found that interaction styles that reduce social distance with the patient and improve patient comprehension of health issues lead to improved engagement in HIV care. Similarly, patient-friendly clinic services, such as patient orientation to the clinic or open access scheduling, have been documented to reduce missed appointments. In HIV infection, brief face-to-face meetings with clinic staff upon returning for care, interim visit calls, appointment reminder calls, and missed visit follow-up calls improved visit adherence in a randomized control trial of usual care versus enhanced personal contact.
There are several limitations to this study. Though we were able to recruit a large number of individuals not retained in care, there may be differences in those patients who were unable to be recruited. These patients may be even less engaged in care, and thus may have different barriers and facilitators than participants in this study. Additionally, patients' responses may have been influenced by social desirability bias. Ensuring confidentiality and training interviewers to avoid judgmental reactions helped minimize this risk. Finally, the findings of this study may not generalize to other populations, as our patients, clinical practices, and geographic and cultural environment may vary from others. Moreover, not all barriers and facilitators identified may apply to the same degree across populations and locales.