Avoiding Detours on the Road to HIV Treatment Success
Baligh R. Yehia, Shreya Kangovi, Ian Frank
To fully benefit from antiretroviral therapy (ART), people living with HIV (PLWH) need to be aware of their HIV infection, linked to and engaged in regular HIV care, and must receive and adhere to ART.[1,2] Completion of all these steps is often unsuccessful, with only 28% of all PLWH in United States achieving viral suppression. Our current understanding for improving health behaviors (linkage to care, retention in care, ART receipt and adherence) and outcomes (viral suppression, prevention of AIDS-defining conditions, transmission of HIV, and survival) relies on modifying patient and environmental factors. (Fig. 1) However, this framework is static and does not account for patients in transition.
Figure 1.Revised behavioral model for people living with HIV. Adapted from .
Helping patients negotiate transitions is essential for HIV treatment success. Transitions of care are defined as the movement of patients between different levels of care, healthcare locations, or providers. They can occur within the same setting (e.g. hospital) or between settings (e.g. hospital to outpatient care), and usually represent changes in health status or social state.[4–6] Transitions are inherently difficult for patients, but are particularly challenging for PLWH who face high rates of poverty, mental illness, and confront HIV-related stigma and discrimination. Emerging data suggests that transitions of care are important determinants of patient behaviors and outcomes.[8–12]
Transitions of Care Impact Health Behaviors and Outcomes
For PLWH, commonly encountered transitions include transfers from inpatient to outpatient care, correctional institution to community-based care, and pediatric/adolescent to adult clinic. HIV-infected patients are at increased risk of medication errors when transitioning from inpatient to outpatient care given their complex medication regimens, multiple comorbidities, and interactions with inpatient providers who may lack experience with HIV infection and ART. Direct communication between hospital physicians and primary care providers occur in only 3–30% of all hospital discharges, and discharge summaries are infrequently available at the time of first postdischarge visit. This lack of communication may lead to ART medication errors and unrecognized drug–drug interactions, resulting in harmful side effects, development of drug resistance, and treatment discontinuation.
In transitioning from correctional institution to community-based care, released inmates must contend with a variety of new concerns, including reconnecting with family, securing housing and employment, obtaining health insurance, and establishing outpatient HIV care. These sudden shifts in socioeconomic and healthcare factors compromise health outcomes for many PLWH transitioning from prison back to the community.[8,9] Among 2115 HIV-infected inmates on therapy, only 18% fill an initial prescription for ART within 30 days of release, and 30% within 60 days. Reincarcerated PLWH who were on ART prior to release experienced a decrease in CD4 cell count by 80 cell/μl and an increase in HIV viral load by 1.14 log10 copies/ml compared to their last recorded prison measure.
Adolescents and young adults transitioning from pediatric/adolescent to adult HIV care face changes in delivery of care, health information, and developmental stage. Youth living with HIV are accustomed to an interdisciplinary approach to care. This contrasts with the adult care model, where medical, mental health, and social services are often fragmented, requiring more independent navigation of the healthcare system. Youth in transition must also confront the discrimination, stigma, and fear associated with disclosing their HIV status to new providers and other patients. Among a cohort of young adults transitioning from pediatric/adolescent to adult care, immune function trended downward, 45% of patients reported that the transition was more difficult than expected, and 32% could not find emotional support services. Lastly, adult care necessitates more autonomous, self-directed management of HIV infection compared with pediatric/adolescent care. Many pediatric programs utilize unique adherence tools such as mobile phone short message service (text messaging) to encourage compliance with HIV care and treatment. Loss of this, and other support, may compromise retention in care and adherence to therapy for patients with differing levels of developmental readiness to transition.
The Dynamic Behavioral Model
To account for the effects of care transitions on health behaviors and outcomes, we introduce the Dynamic Behavioral Model. (Fig. 2) This new framework differs from prior models in several ways. First, it illustrates the interconnected relationship between patient and environmental factors. Many factors (e.g. transportation issues, availability and use of mental health services, and patient-provider concordance) do not belong in one domain, but rather involve both the patient and their environment. Second, this model highlights key factors which change as patients move from one care setting to another, namely socioeconomic status, access to care, developmental stage, health information, and delivery of care. Capturing this change is critical, because the relative difference between factors may be as important as the absolute state. For example, among 159 934 adult respondents to the 2004–2009 National Health Interview Survey, newly uninsured individuals were almost twice as likely to use emergency care services compared with continuously uninsured adults. This change in access to care (i.e. losing insurance) had a greater impact on patient behavior than no change at all. Lastly, the Dynamic Behavioral Model provides a framework for understanding the movement of PLWH between differing healthcare settings and can be used as a tool to help manage transitions in care.
Figure 2.Dynamic behavioral model for people living with HIV.
Managing Healthcare Transitions for People Living With HIV
Successful transitions require all stakeholders – patients, providers, and caregivers – to anticipate future challenges and develop feasible solutions (). Changes in socioeconomic status (e.g. loss of housing, employment, or financial resources) and access to care (e.g. loss of insurance or primary provider) are commonly encountered by patients transitioning from one setting to another. Case management and patient navigation, employing community health workers to support and guide patients through the healthcare system, are effective at decreasing some of these obstacles to care. Among 437 HIV-infected patients with housing, insurance, and structural barriers to care, patient navigation increased the proportion of patients with an undetectable viral load by 50% and the proportion of patients retained in care by 15%. Utilizing social support services during transitions may help patients address changes in socioeconomic status or access to care.
Table 1. Challenges and potential solutions for HIV-infected patients in transition.
|Transition domain||Changes between care settings||Examples||Potential solutions|
|Socioeconomic status||Housing Employment||Prisoner needs to find housing upon release.||Address any competing needs (lack of housing, insurance, or social support) in conjunction with social workers and case managers.|
|Development||Developmental stage||Adolescent transitioning from pediatric/adolescent to adult care must manage HIV infection alone.||Provide developmentally appropriate coaching for self-care prior to transitions.|
| || || ||Arrange a pretransfer visit where a receiving team member meets with the patient and the sending team prior to transfer and explains care delivery in the new setting.|
|Access to care||Health insurance |
|Prisoner needs to obtain insurance for antiretroviral therapy and to reestablish primary care.||Utilize social workers to help obtain health insurance.|
| || || ||Employ patient navigators to assist in arranging outpatient appointments and to ensure adherence to care.|
|Health information||Medications |
Disclosure of HIV status to new individuals/providers
|Inpatient providers need to communicate changes in antiretroviral and prophylaxis medications to outpatient providers.||Sending team includes relevant data elements in transfer summary, such as changes to medications.|
|Delivery of care||Level of patient autonomy |
Integration of services
|Community-based healthcare is more fragmented than institutional-based healthcare, necessitating independent navigation of the healthcare system.||Use pretransfer visits and patient navigators to help individuals adjust to and navigate the new healthcare environment|
Assessing patient readiness, promoting medical independence, and engaging caregivers are considered critical elements to successfully transitioning youth from pediatric/adolescent to adult HIV care.[5,10,16,20] New tools are needed to help providers manage the developmental aspects of care transitions. Specifically, programs aimed at assisting adolescent patients in developing the necessary skills for independently managing their own healthcare.
Effective transfer of health information is necessary for a successful care transition. The sending team must communicate relevant, accurate, timely, and patient-centered information, whereas the receiving team is responsible for assimilating this information and continuing the plan of care. When transferring patients with HIV infection, providers should remember to include: current medications and drug allergies, the most recent CD4 cell count and HIV viral load, history of opportunistic infections, documentation of resistance viruses, hepatitis coinfection status, and an assessment of the social situation, as these are important for receiving team providers starting or altering ART. Disclosure of HIV status is a unique and dynamic piece of health information that concerns both patients and providers. During a transition, many patients are anxious or fearful of disclosing their HIV status to new providers and other patients. Information on individuals who are aware or unaware of a patient's HIV infection should be communicated to prevent unwanted disclosure of HIV status. Healthcare organizations and providers should standardize the information necessary for transfer and leverage health information technology to optimize secure information exchange.
As patients move between healthcare settings, the delivery of care often changes. This may take the form of decreased support services and care integration, change in provider type and practice style, and the necessity of increased patient autonomy. Providers must be aware of these changes and prepare patients for the transition. This may involve incorporating a 'pretransfer visit,' where a receiving team member meets with the patient and the sending team prior to transfer; employing transitional care managers, advanced care nurses who care for the patient with the primary provider for a period of time posttransfer; or utilizing patient navigators.
HIV-infected individuals are particularly vulnerable during periods of transition. The Dynamic Behavioral Model provides a framework for understating how changes in socioeconomic status, development stage, access to care, health information, and delivery of care influence health behaviors and outcomes. Providers, healthcare organizations, and payers should no longer view patients as static individuals confined to a particular health setting, but rather consider them as part a care continuum transferring between settings and providers with continuous management. Focusing on healthcare transitions may provide additional strategies for improving engagement in care and clinical outcomes.
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B.R.Y. developed the concept and drafted the manuscript. S.K. drafted the manuscript and provided critical revisions. I.F. provided critical revisions, administrative support, and study supervision.
This work was support, in part, by the Penn Center for AIDS Research, P30 AI 045008. B.R.Y. was supported by the National Institutes of Health (K23-MH097647-01A1).
AIDS. 2013;27(10):1529-1533. © 2013 Lippincott Williams & Wilkins