Missed Clinic Visits Linked to Tripled Risk of Death in U.S. HIV Group

A 6-year study of 3672 US adults with HIV infection linked missing three or more HIV clinic appointments to more than a tripled the risk of death from any cause.1 Two other methods of determining steady clinic attendance found a link between poor attendance and more than a doubled risk of death from any cause.

In recent years HIV researchers have begun to study the impact of steady HIV care on response to antiretroviral therapy and survival. For a person with HIV, the continuing interaction with healthcare professionals involves getting diagnosed with HIV infection, starting care for HIV, staying in care, starting antiretroviral therapy, and reaching an undetectable viral load. Of the 1.2 million HIV-positive people in the United States, the Centers for Disease Control and Prevention (CDC) estimates that only 25% are in care, started antiretroviral therapy, and reached an undetectable viral load.2 Other research shows that staying in care and keeping the viral load undetectable lowers chances of illness, death, and passing HIV to a sex partner.3-5

To underline the importance of getting into care for HIV infection and staying in care, the US Department of Health and Human Services (DHHS)6 and the Institute of Medicine7 spelled out standards for HIV-positive people staying in care. Both of these sets of standards focus on the number of visits a person attends in a certain period. Researchers who conducted this new study1 wondered if measuring the number of scheduled appointments a person misses may also predict how well that person does in care and even how long that person lives.

To evaluate these two methods of measuring staying in care -- visits made and visits missed -- these researchers studied more than 3600 HIV-positive people starting antiretroviral therapy.

How the Study Worked

This analysis involved HIV-positive people in care at five US clinics that are part of a larger HIV study group, the Centers for AIDS Research Network of Integrated Clinical Systems (CNICS). Every 3 months workers at the clinics send findings on the care and health of individual patients to a central database that collects this information for the whole CNICS network.

This study focused on people starting their first antiretroviral combination at one of the five CNICS clinics at any time from January 2000 through July 2010. All study participants were alive 24 months after starting antiretroviral therapy. From that 24-month point, the researchers used national health records to determine how many people died of any cause. The research team used three methods to measure HIV care appointment keeping through 24 months by study participants (Table 1). Missed visits were those the patient or the provider did not cancel in advance.

Table 1. Three Methods of Measuring Appointment Keeping by People With HIV
MethodDefinition
Institute of MedicineTwo kept visits at least 90 days apart in a 12-month period. For this study, the researchers recorded kept visits over two consecutive 12-month periods.
Department of Health and Human Services (DHHS)At least one kept visit in each 6-month period over a 24-month period, with at least 60 days between visits in each 6-month period.
Missed-visit definitionMissed visits over a 24-month period, grouped as 0 missed visits, 1 to 2 missed visits, or more than 2 missed visits.

Then the researchers used standard statistical methods to determine how the three measures of appointment keeping over 24 months affected the risk of death after that 24-month period. They performed a separate statistical analysis to see how the third definition -- missed visits -- affected risk of death in people classified by the first two methods as good appointment keepers. These statistical analyses considered the impact of other factors that might affect appointment keeping (age, race, sex, and initial viral load and CD4 count). As a result these analyses can determine how the three methods of appointment keeping affected risk of death regardless of whatever other risk factors a person had.

What the Study Found

The researchers assessed 3672 people, 2952 (80%) of them men, 1950 (53%) white, 1377 (38%) black, and the rest of other or unknown ethnic backgrounds. Age averaged 38 years, and CD4 count averaged 220 before people started antiretroviral therapy. Everyone was in care at one of five clinics in Birmingham, Alabama, Chapel Hill, North Carolina, Cleveland, San Diego, or Seattle.

Proportions of people who kept HIV care appointments were 64% by the Institute of Medicine definition and 59% by the DHHS definition (Figure 1). Similar proportions of study participants missed 0 visits (32%), 1 to 2 visits (39%), or more than 2 visits (29%). Study participants missed an average 2.1 visits.

HIV Appointment Keeping Measured Three Ways
HIV Appointment Keeping Measured Three Ways Figure 1. About 60% of adults kept clinic appointments in the 24 months after starting antiretroviral therapy, according to definitions by the Institute of Medicine (IOM) and the US Department of Health and Human Services (DHHS). (See Table 1 for definitions.) Similar proportions (about one third) missed 0 visits, 1 or 2 visits, or more than 2 visits in the 24 months after starting antiretrovirals.

Median observation time from when people started antiretroviral therapy was 6 years. From a point starting 24 months after antiretroviral therapy began, 332 people (9%) died to yield a death rate of 20.6 deaths per 1000 person-years (meaning about 20 of 1000 people died every year).

Death rates were lower in people who kept appointments by the Institute of Medicine definition (16.0 per 1000 person-years) or by the DHHS definition (15.3 per 1000). The death rate was even lower in people who missed no clinic appointments (11.3 per 1000). In contrast, death rates were higher in people who missed visits by the Institute of Medicine definition (29.5 per 1000) or by the DHHS definition (29.0 per 1000) and in people who missed 1 or 2 visits (20.4 per 1000) or more than 2 visits (30.9 per 1000).

Compared with people who met the Institute of Medicine definition for keeping HIV care appointments, those who did not had more than a doubled risk of death (Figure 2). Compared with those who met the DHHS definition for keeping appointments, those who did not also had more than a doubled risk of death (Figure 2). Compared with people who missed no visits, those who missed 1 or 2 had a doubled risk of death, and those who missed more than 2 had a tripled risk of death (Figure 2).

Appointment Keeping and Risk of Death
Appointment Keeping and Risk of Death Figure 2. In a study of 3672 people starting antiretroviral therapy in the United States, not keeping HIV care appointments in the 2 years after starting treatment more than doubled the risk of death after those first 2 years of treatment, according to an Institute of Medicine (IOM) definition of appointment keeping and a Department of Health and Human Services (DHHS) definition. Compared with missing 0 visits, people who missed 1 or 2 visits had a doubled risk of death and those who missed more than 2 visits had a tripled risk of death.

Compared with whites, blacks had about a 50% higher risk of death after taking antiretrovirals for 2 years. Compared with people who started antiretroviral therapy with a CD4 count above 500, those who started with a count below 50 had more than a doubled risk of death after taking antiretrovirals for 2 years. Every 10 years of age raised the death risk about 50%. Death risk was similar in women and men.

Among people who met the Institute of Medicine definition or the DHHS definition of keeping HIV care appointments, about two thirds did miss at least 1 visit and one quarter missed more than 2 visits. Next the researchers conducted statistical analyses limited to people who met the Institute of Medicine and DHHS definitions for keeping appointments. Those who nevertheless missed 1 or 2 visits had about a 1.7 times higher death risk after the first 2 years of antiretroviral therapy. Those who missed more than 2 visits had a 3.6 times higher death risk after the first 2 years of antiretroviral therapy.

What the Results Mean for You

This study of almost 3700 people with HIV across the United States found strong evidence that missing HIV care appointments may be linked to a higher risk of death. The researchers measured appointment keeping in three ways. Missing visits during the first 24 months of antiretroviral therapy by each of those ways doubled or tripled the risk of death from a point starting 24 months after therapy began.

Once a person tests positive for HIV and begins care, keeping appointments regularly is the next crucial step to returning to health. Another study reviewed on page 45 of this issue of HIV Treatment Alerts found that missing appointments lowered chances of starting antiretrovirals and reaching an undetectable viral load.8 And the next study reviewed in this issue found that about three quarters of people who made two or more clinic visits at least 3 months apart had an undetectable viral load.9 People who keep their HIV care appointments have the best chance of getting all the benefits of care -- starting antiretroviral therapy, reaching an undetectable viral load, gaining CD4 cells, and getting help avoiding or controlling the serious diseases that threaten people with HIV infection.

The definitions of appointment keeping developed by the Institute of Medicine and the US Department of Health and Human Services (DHHS) (Table 1) both predicted death in this study group. But the researchers found that some people counted as being in care by these definitions did miss one or more visits. Simply counting missed visits -- those not cancelled beforehand by the patient or provider -- was the strongest predictor of death after the first 24 months of antiretroviral therapy.

HIV care experts in the United States developed guidelines to help HIV providers get HIV-positive people into care, stay in care, and take their antiretrovirals as scheduled.10 If you have trouble keeping medical appointments -- for any reason -- you should talk to your provider to plan ways to improve appointment keeping. Your provider may put you in touch with a case worker who can help you address problems that make appointment keeping tough.11 Some medical offices have community-based "patient navigators" who help HIV-positive people manage many complicated aspects of health care.12

Some problems that cause people to miss medical visits may be easy to solve. Other problems may have deep roots that are hard to get at. But people with HIV should find help addressing these problems. And your HIV provider or other professionals in the HIV care office can get you the help you need.

References

  1. Mugavero MJ, Westfall AO, Cole SR, et al. Beyond core indicators of retention in HIV care: missed clinic visits are independently associated with all-cause mortality. Clin Infect Dis. 2014;59:1471-1479.
  2. Centers for Disease Control and Prevention. HIV in the United States: the stages of care.
  3. Cohen MS, Chen YQ, McCauley M, et al. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365:493-505.
  4. Thompson MA, Aberg JA, Hoy JF, et al. Antiretroviral treatment of adult HIV infection: 2012 recommendations of the International Antiviral Society-USA panel. JAMA. 2012;308:387-402.
  5. Das M, Chu PL, Santos GM, et al. Decreases in community viral load are accompanied by reductions in new HIV infections in San Francisco. PLoS One. 2010;5:e11068.
  6. US Department of Health and Human Services. HIV core indicators.
  7. Institute of Medicine. Monitoring HIV care in the United States: indicators and data systems. March 15, 2012.
  8. Kahana SY, Fernandez MI, Wilson PA, et al. Rates and correlates of antiretroviral use and virologic suppression among perinatally and behaviorally HIV-infected youth linked to care in the United States. J Acquir Immune Defic Syndr. 2015; 68:169-177.
  9. Cohen SM, Hu X, Sweeney P, Johnson AS, Hall HI. HIV viral suppression among persons with varying levels of engagement in HIV medical care, 19 US jurisdictions. J Acquir Immune Defic Syndr. 2014;67:519-527.
  10. Thompson MA, Mugavero MJ, Amico KR, et al. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care Panel. Ann Intern Med. 2012;156:817-833.
  11. Gardner LI, Metsch LR, Anderson-Mahoney P, et al; Antiretroviral Treatment and Access Study Group. Efficacy of a brief case management intervention to link recently diagnosed HIV-infected persons to care. AIDS. 2005;19:423-431.
  12. Bradford JB, Coleman S, Cunningham W. HIV system navigation: an emerging model to improve HIV care access. AIDS Patient Care STDS. 2007;21(Suppl 1):S49-S58.