Clinical interventions that lengthen life after HIV infection and significantly reduce transmission could have greater impact if more HIV-diagnosed people received HIV care. We tested a surveillance-based approach to investigating reasons for delayed entry to care.
Health department staff in three states and two cities contacted eligible adults diagnosed with HIV four to 24 months previously who had no reported CD4+ lymphocyte (CD4) or viral load (VL) tests. The staff conducted interviews, performed CD4 and VL testing, and provided referrals to HIV medical care. Reported CD4 and VL tests were prospectively monitored to determine if respondents had entered care after the interview.
Surveillance-based follow-up uncovered problems with reporting CD4 and VL tests, resulting in surveillance improvements. However, reporting problems led to misspent effort locating people who were already in care. Follow-up proved difficult because contact information in surveillance case records was often outdated or incorrect. Of those reached, 37% were in care and 29% refused participation. Information from 132 people interviewed generated ideas for service improvements, such as emphasizing the benefits of early initiation of HIV care, providing coverage eligibility information soon after diagnosis, and leveraging other medical appointments to provide assistance with linkage to HIV care.
Surveillance-based follow-up of HIV-diagnosed individuals not linked to care provided information to improve both surveillance and linkage services, but was inefficient because of difficulties identifying, locating, and recruiting eligible people. Inefficiencies attributable to missing, incomplete, or inaccurate surveillance records are likely to diminish as data quality is improved through ongoing use.
[Show abstract][Hide abstract] ABSTRACT: Reducing HIV incidence in the United States and improving health outcomes for people living with HIV hinge on improving access to highly effective treatment and overcoming barriers to continuous treatment. Using laboratory tests routinely reported for HIV surveillance to monitor individuals' receipt of HIV care and contacting them to facilitate optimal care could help achieve these objectives. Historically, surveillance-based public health intervention with individuals for HIV control has been controversial because of concerns that risks to privacy and autonomy could outweigh benefits. But with the availability of lifesaving, transmission-interrupting treatment for HIV infection, some health departments have begun surveillance-based outreach to facilitate HIV medical care.
Guided by ethics frameworks, we explored the ethical arguments for changing the uses of HIV surveillance data. To identify ethical, procedural, and strategic considerations, we reviewed the activities of health departments that are using HIV surveillance data to contact persons identified as needing assistance with initiating or returning to care.
Although privacy concerns surrounding the uses of HIV surveillance data still exist, there are ethical concerns associated with not using HIV surveillance to maximize the benefits from HIV medical care and treatment. Early efforts to use surveillance data to facilitate optimal HIV medical care illustrate how the ethical burdens may vary depending on the local context and the specifics of implementation. Health departments laid the foundation for these activities by engaging stakeholders to gain their trust in sharing sensitive information; establishing or strengthening legal, policy and governance infrastructure; and developing communication and follow-up protocols that protect privacy.
We describe a shift toward using HIV surveillance to facilitate optimal HIV care. Health departments should review the considerations outlined before implementing new uses of HIV surveillance data, and they should commit to an ongoing review of activities with the objective of balancing beneficence, respect for persons, and justice.
[Show abstract][Hide abstract] ABSTRACT: The "cascade of care" displays the proportion of individuals who are infected with human immunodeficiency virus (HIV), diagnosed, linked, retained, on antiretroviral treatment, and HIV suppressed. We examined the implications of including death in the use of this cascade for program and public health performance metrics.
Individuals newly diagnosed with HIV and living in Calgary between 2006 and 2013 were included. Through linkage with Public Health and death registries, the deaths (ie, all-cause mortality) and their distribution within the cascade were determined. Mortality rates are reported per 100 person-years.
Estimated new HIV infections were 680 (543 confirmed and 137 unknown cases). Forty-three individuals, after diagnosis, were never referred for HIV care. Despite referral(s), 88 individuals (18%) never attended the clinic for HIV care. Of individuals retained in care, 87% received antiretroviral therapy and 76% achieved viral suppression. Thirty-six deaths were reported (mortality rate, 1.50/100 person-years). One diagnosis was made posthumously. Deaths (20 of 35; 57%) occurred for individuals linked but not retained in care (6.93/100 person-years), and 70% were HIV-related. Mortality rate for patients in care was 0.79/100 person-years. Retained patients with detectable viremia had a death rate of 2.49/100, which contrasted with 0.28/100 person-years in those with suppressed viremia. Eight of these 15 deaths (53%) were HIV-related.
Over half of deaths occurred in those referred but not effectively linked or retained in HIV care, and these cases may be easily overlooked in standard HIV mortality studies. Inclusion of deaths into the cascade may further enhance its value as a public health metric.
[Show abstract][Hide abstract] ABSTRACT: Retention in HIV care has important implications. Few studies examining retention include comprehensive and heterogeneous populations, and few examine factors associated with returning to care after gaps in care. We identified reasons for gaps in care and factors associated with returning to care.
We extracted medical record and state-wide reporting data from 1865 patients with one HIV visit to a New York facility in 2008 and subsequent 6-month gap in care. Using mixed effect logistic regression, we examined sociodemographic, clinical, and facility characteristics associated with returning to care.
Most patients were men (63.2%), black (51.4%), had Medicaid (53.9%). Many had CD4 counts >500 cells/mm (34.4%) and undetectable viral loads (45.0%). Most (55.9%) had unknown reasons for gaps in care; of those with known reasons, reasons varied considerably. After a gap, 54.6% returned to care. Patients who did (vs. did not) return to care were more likely to have stable housing, longer duration of HIV, high CD4 count, suppressed VL, antiretroviral medications, and had facilities attempt to contact them. Those who returned to care were less likely to be uninsured and have mental health problems or substance use histories.
Over half of our sample of patients in New York with one HIV visit and subsequent 6-month gap in care returned to care; no major reasons for gaps emerged. Nevertheless, our findings emphasize that stabilizing patients' psychosocial factors and contacting patients after a gap in care are key strategies to retain HIV-positive patients in care in New York.
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