The Challenges of the HIV Continuum of Care in the U.S.
The Challenges of the HIV Continuum of Care in the U.S.
A synthesis of the 10 articles that are included in this supplemental issue of JAIDS is presented in this section, roughly grouped by the steps in the HIV continuum of care. The cities, CFAR/APC, first author and Site PI(s), and Project Aims for each project are shown in Table 1.
A retrospective cohort study was conducted in Houston to assess whether a routine opt-out HIV testing program coupled with linkage to HIV care services based in emergency departments improved parameters along the HIV continuum of care for persons previously diagnoses with HIV infection. Among more than 2000 persons, significant improvements were demonstrated when previsit and postvisit rates were compared for linkage to care, retention in care, and viral suppression.
In New York City, qualitative interviews were conducted with 80 HIV-infected persons in populations identified as inadequately engaged in HIV medical care: African immigrants, previously incarcerated adults, transgender women, and young men who have sex with men. Barriers and facilitators to care were identified in 3 principal domains: health care and system factors, such as the patient–provider relationship and social service agencies; social factors, including family and social support, stigma, substance abuse, sexual orientation, gender identity, and incarceration; and individual level factors, such as mental illness, substance use, and resilience.
In Chicago, a clinic-based approach for assessing retention in care (based on the number of patient visits) for about 2500 patients seen at Cook County's HIV clinic in 2011 was compared with varying surveillance-based approaches (based on HIV laboratory reports to the Chicago Department of Public Health). The authors found that clinic- and surveillance-based databases can be securely matched and compared for large numbers of patients and that a surveillance definition of having 2 or more HIV viral loads and/or CD4 counts from the same laboratory more than 90 days apart had the best balance of sensitivity and specificity when compared with clinic-based definitions.
Sixteen key stakeholder discussions, a "national think tank," and a local community consultation were held in San Francisco to gain insights into community acceptance and perspectives on the use of surveillance data by departments of public health to improve linkage, retention, and reengagement rates for HIV-infected persons in care. The results supported the use of multiple approaches if key stakeholders were involved early in the development of such programs and throughout their implementation. Multiple strategies, each with their own benefits and drawbacks, were deemed acceptable including provider-mediated outreach, electronic data linkages, and direct outreach by trained patient navigators.
In Philadelphia, investigators examined whether there were individual and community-level factors associated with poor rates of retention in care and viral suppression in geographic areas that had been previously found to have low rates of these parameters. The authors found significant associations between residence in these "hotspots" and factors such as gender, economic deprivation, travel distance to medical care and pharmacies, and access to public transit.
In Washington, DC, 169 HIV outpatients were surveyed regarding their care-seeking behaviors and matched to both clinic-based records and the DC DOH surveillance registry. Using HRSA definitions, 68% of patients were classified as in care, 20% as receiving sporadic care, and 12% as out of care. However, of the 21 patients defined as out of care, 52% believed they were fully engaged in care, 71% had a non-HIV medical visit in the past year, and 90% reported they were on ARV therapy. Thus, patient perceptions of their HIV care status differed from clinic- and surveillance-based definitions.
In San Francisco, clinic-based outreach and matching with the local Department of Public Health HIV surveillance registry were used to assess how these could be used in a complementary manner to assess whether HIV patients who were late for HIV primary care at a large public clinic were truly lost to care. Of a 10% sample of patients who were believed to be out of care, 63% were found to be in care by more intensive clinic-based outreach, whereas of those classified by the local HIV surveillance registry as out of care, 52% were found by clinic-based tracking to be in care. Thus, clinic-based tracking and surveillance registry matching substantially reduced an estimate of the cumulative incidence of those lost to care over 3 years based on patient visit information alone.
In-person interviews were conducted with 444 HIV-infected outpatients in Miami to explore whether individual and "systemic" barriers were associated with clinic attendance. Nonclinic attenders were found to have significantly higher viral loads and lower CD4 counts than regular and irregular attenders, significantly greater individual barriers to care (depression, quality of life, etc) compared with regular attenders, and significantly greater systemic barriers including decreased communication with their physicians and increased transportation barriers than regular and irregular attenders. Importantly, an increased total number of barriers was found to be significantly associated with reduced rates of viral suppression.
In Atlanta, 5 focus group discussions were conducted among 35 gay and bisexual men to assess whether a dyadic couple-based approach to HIV care could affect positive outcomes along the HIV care continuum. Participants indicated that the dyadic approach could provide emotional, informational, and "instrumental" (ie, accompaniment, financial assistance, reminders) support that could contribute to improved engagement in HIV care and ARV adherence.
Finally, a randomized pilot study was conducted in Los Angeles among 50 HIV-infected patients to assess the impact of self-monitoring of ARV medication adherence, mental health, substance use, and sexual risk behaviors using smartphone technology compared with bi-weekly Web-based surveys. The authors conclude that self-monitoring of various HIV-related parameters is technically feasible and potentially efficacious and that further research of this approach is warranted.
Synthesis of ECHPP-2 Continuum of Care Articles
A synthesis of the 10 articles that are included in this supplemental issue of JAIDS is presented in this section, roughly grouped by the steps in the HIV continuum of care. The cities, CFAR/APC, first author and Site PI(s), and Project Aims for each project are shown in Table 1.
A retrospective cohort study was conducted in Houston to assess whether a routine opt-out HIV testing program coupled with linkage to HIV care services based in emergency departments improved parameters along the HIV continuum of care for persons previously diagnoses with HIV infection. Among more than 2000 persons, significant improvements were demonstrated when previsit and postvisit rates were compared for linkage to care, retention in care, and viral suppression.
In New York City, qualitative interviews were conducted with 80 HIV-infected persons in populations identified as inadequately engaged in HIV medical care: African immigrants, previously incarcerated adults, transgender women, and young men who have sex with men. Barriers and facilitators to care were identified in 3 principal domains: health care and system factors, such as the patient–provider relationship and social service agencies; social factors, including family and social support, stigma, substance abuse, sexual orientation, gender identity, and incarceration; and individual level factors, such as mental illness, substance use, and resilience.
In Chicago, a clinic-based approach for assessing retention in care (based on the number of patient visits) for about 2500 patients seen at Cook County's HIV clinic in 2011 was compared with varying surveillance-based approaches (based on HIV laboratory reports to the Chicago Department of Public Health). The authors found that clinic- and surveillance-based databases can be securely matched and compared for large numbers of patients and that a surveillance definition of having 2 or more HIV viral loads and/or CD4 counts from the same laboratory more than 90 days apart had the best balance of sensitivity and specificity when compared with clinic-based definitions.
Sixteen key stakeholder discussions, a "national think tank," and a local community consultation were held in San Francisco to gain insights into community acceptance and perspectives on the use of surveillance data by departments of public health to improve linkage, retention, and reengagement rates for HIV-infected persons in care. The results supported the use of multiple approaches if key stakeholders were involved early in the development of such programs and throughout their implementation. Multiple strategies, each with their own benefits and drawbacks, were deemed acceptable including provider-mediated outreach, electronic data linkages, and direct outreach by trained patient navigators.
In Philadelphia, investigators examined whether there were individual and community-level factors associated with poor rates of retention in care and viral suppression in geographic areas that had been previously found to have low rates of these parameters. The authors found significant associations between residence in these "hotspots" and factors such as gender, economic deprivation, travel distance to medical care and pharmacies, and access to public transit.
In Washington, DC, 169 HIV outpatients were surveyed regarding their care-seeking behaviors and matched to both clinic-based records and the DC DOH surveillance registry. Using HRSA definitions, 68% of patients were classified as in care, 20% as receiving sporadic care, and 12% as out of care. However, of the 21 patients defined as out of care, 52% believed they were fully engaged in care, 71% had a non-HIV medical visit in the past year, and 90% reported they were on ARV therapy. Thus, patient perceptions of their HIV care status differed from clinic- and surveillance-based definitions.
In San Francisco, clinic-based outreach and matching with the local Department of Public Health HIV surveillance registry were used to assess how these could be used in a complementary manner to assess whether HIV patients who were late for HIV primary care at a large public clinic were truly lost to care. Of a 10% sample of patients who were believed to be out of care, 63% were found to be in care by more intensive clinic-based outreach, whereas of those classified by the local HIV surveillance registry as out of care, 52% were found by clinic-based tracking to be in care. Thus, clinic-based tracking and surveillance registry matching substantially reduced an estimate of the cumulative incidence of those lost to care over 3 years based on patient visit information alone.
In-person interviews were conducted with 444 HIV-infected outpatients in Miami to explore whether individual and "systemic" barriers were associated with clinic attendance. Nonclinic attenders were found to have significantly higher viral loads and lower CD4 counts than regular and irregular attenders, significantly greater individual barriers to care (depression, quality of life, etc) compared with regular attenders, and significantly greater systemic barriers including decreased communication with their physicians and increased transportation barriers than regular and irregular attenders. Importantly, an increased total number of barriers was found to be significantly associated with reduced rates of viral suppression.
In Atlanta, 5 focus group discussions were conducted among 35 gay and bisexual men to assess whether a dyadic couple-based approach to HIV care could affect positive outcomes along the HIV care continuum. Participants indicated that the dyadic approach could provide emotional, informational, and "instrumental" (ie, accompaniment, financial assistance, reminders) support that could contribute to improved engagement in HIV care and ARV adherence.
Finally, a randomized pilot study was conducted in Los Angeles among 50 HIV-infected patients to assess the impact of self-monitoring of ARV medication adherence, mental health, substance use, and sexual risk behaviors using smartphone technology compared with bi-weekly Web-based surveys. The authors conclude that self-monitoring of various HIV-related parameters is technically feasible and potentially efficacious and that further research of this approach is warranted.
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