Patient “no-shows” are a persistent problem, not only for health care facilities, which suffer from lost productivity and money, but also for patients. For people living with HIV (PLWH), retention in care is essential for obtaining and maintaining viral suppression, and missed appointments are associated with worse health outcomes. Specifically, PLWH who are retained in care have lower rates of developing AIDS-defining illnesses and are less likely to transmit HIV than PLWH who lack consistent care.
A survey published last month in AIDS Care looked at what prevented PLWH from keeping their appointments at one Chicago HIV clinic and found that employment and childcare were the two most common barriers to retention in care.
Jessica Ridgway, assistant professor of Infectious Diseases and Global Health and director of Predictive Analytics for the Chicago Center for HIV Elimination at the University of Chicago, and colleagues assessed several risk factors for poor retention in care. They conducted the survey at the University of Chicago Medical Center, which serves a predominantly lower-income African-American community, to find any association between appointment self-efficacy and prospective retention.
To assess self-reported barriers, researchers asked 105 clients, who had attended at least one prior appointment for HIV care at the center, to choose the factors that made it difficult to attend appointments from a list including health insurance, caring for children or other family members, scheduling, inconvenient hours, and inability to take time off from work. Then researchers assessed retention using two metrics: first, the Health Resources and Services Administration HIV/AIDS Bureau’s (HRSA/HAB) retention definition of two attended appointments within 13 months, at least 90 days apart; and, second, having no missed appointments defined as no-shows or same-day cancellations.
Eighty-eight percent of patients said they were sure they would be able to attend their scheduled appointments over the next year, indicating high appointment self-efficacy. Twelve percent of patients with low appointment self-efficacy said taking time off work was a barrier. Forty percent of patients with at least one child in the household said childcare made it more difficult to attend appointments. Most patients had a high level of perceived staff support and a positive relationship with staff (71% and 87%, respectively). The authors found no significant association between appointment self-efficacy and either HRSA/HAB or missed visits retention. “Despite a majority (55%) of patients having missed at least one appointment in the year prior to survey administration, the vast majority (89%) of patients reported being sure they could attend future appointments,” the authors wrote.
Ridgway told TheBodyPro that the survey results had several takeaways for HIV clinics, especially those serving lower-income patients. “Patients in our study who were employed had jobs with inflexible work hours,” she said. Despite the employment hurdle, several patients who missed appointments made them up a month later, she added.
Work and childcare are only two of many factors among many that may affect retention in care for PLWH. People in rural areas and those with substance use dependencies and disorders and undiagnosed mental illness are also more likely to have gaps in care, as are men who identify as heterosexual, people who are Black and of other nonwhite races, transgender women, and younger PLWH (under 24 years). Not surprisingly, PLWH who are uninsured or underinsured are also at greater risk of dropping out of care.
With that in mind, Ridgway cautioned that the survey was small, consisting of less than half the number of PLWH served by the clinic. “And we only surveyed people attending the appointments, so it is a somewhat biased sample.”
The University of Chicago clinic’s hours are 8 a.m. to 5 p.m. Monday through Friday, with no evening hours. Ridgway said clinics with many clients with inflexible work hours could benefit from having more drop-in hours, or evening and weekend hours. “Or possibly mobile van services,” she said. “The more flexible we are, the more helpful for retention.”
Ridgway said there is no one-size-fits-all approach to getting people retained in care, and that an individualized approach is best if the health care facility can manage it.
“It’s ideal to sit down with patients to see what barriers they might have in attending [an appointment],” she said. “And then you can consider solutions. Maybe you could send them an Uber or Lyft, or give a bus card. Text message reminders and calls help. Having one contact is good.”
A care navigator is better than a doctor as a point of contact, Ridgway added, with the caveat that not every clinic has the staff to do that.
The U of C survey was conducted before COVID stay-at-home orders. Ridgway said her team is compiling data to see how much the pandemic impacted care and retention. “Telehealth and virtual appointments are generally considered good for retention, but we need the data to show how much it improves retention.” One reason that telehealth might not be helpful is the digital divide and whether clients have access to technology and wifi, she said.
A 2019 study by Athenahealth concluded that patients who missed even one appointment with their primary care doctor were 70% more likely not to return within 18 months, underscoring the importance of removing barriers to retention, whether they reside with the challenges experienced by the patient or with the clinic.
According to HIV surveillance data from the Centers for Disease Control and Prevention (CDC), over the past decade, retention in care has wavered between 53% and nearly 58%, even as the number of newly diagnosed people has fallen. But those figures are far below the percentage needed to end the epidemic. According to the National HIV/AIDS Strategy, at least 90% of PLWH need to be retained in care. This reinforces the need for care providers and doctors to establish strong bonds with patients who are living with HIV so that they can work together to eliminate any barriers that might interrupt retention.