Existing Research Pivots to Learn more about COVID-19
In a quest to know more about what people in East Africa know about COVID-19, what they are doing to prevent its spread, and how it is affecting their daily lives, the East Africa International epidemiology Databases to Evaluate AIDS (IeDEA) consortium has created a survey entitled “A longitudinal survey study of the impact of COVID-19 preparedness and response efforts on people living with HIV in East Africa.”
“We anticipate that patients will have varying degrees of understanding about the virus. This knowledge will hopefully increase over time,” said Suzanne Goodrich, MD, Co-Field Director of Research. “We do anticipate that the effects on patients’ mental health and economic situations may worsen over time. We are hopeful that this contact with study staff may prevent patients from running out of HIV medications, missing symptoms of COVID-19 infection or need for other care intervention,” she continued.
Research staff will contact participants enrolled in existing studies to gather this additional information on COVID-19. The first two sections ask about participant’s knowledge of the COVID-19 virus and their preparedness to prevent catching the virus. After discussing these questions the study staff has been trained to share accurate information about COVID-19 including symptoms, modes of transmission and preventative strategies and to answer questions that the participant may have.
The survey will collect information on how efforts to slow the spread of COVID-19 have impacted people in Kenya.
“We chose to reach out to people previously enrolled in ongoing research studies taking place not only at AMPATH, but at other collaborating sites in Kenya and Uganda,” said Goodrich. Although the total number of patients involved is around 1,600 the hope is that their knowledge can be shared with others and that it can also help the clinic staffs to determine the best ways to help patients during this evolving time. Research study staff members will be conducting the survey over the telephone from their own homes.
If questions arise that study staff cannot answer, the questions are forwarded to a designated infectious diseases physician. The goal is to make participants aware of the basic facts about COVID-19, its transmission and symptoms of infection. “We want to make sure they are given factual information and that we have an opportunity to address any incorrect assumptions participants may have,” said Goodrich.
The survey is also designed to ascertain the effects of the pandemic on participants’ daily lives, including living situation, employment, income, food security and schooling. Participants are all HIV-infected and the survey also includes questions about access to HIV care and antiretroviral medications (ART), adherence to their ART regimen and prescribed treatment for tuberculosis (if applicable). Further assessment of their current health status and whether they have recently needed to seek healthcare (such as for COVID-19 related symptoms) are assessed. The last section of questions screens for signs of depression or anxiety.
Any patients found during the survey to have disruptions in their HIV care or ART adherence, evidence of illness, or signs of mental health issues are referred to an appropriate health care facility for evaluation and treatment.
The study is designed so that it may be repeated again in the future. Study designers anticipate repeating it on an every two month basis for some time to see how patients’ knowledge changes over time, as well as the effects on their social and financial situations. Leslie Enane, MD, a pediatric infectious disease physician at the IU School of Medicine, and Michael Scanlon, global health fellow from Mt. Sinai, collaborated with Goodrich in developing the survey. The survey questions and study protocol are available to other investigators to use with their cohorts as well.
Two U.S.-based research teams plan to use the survey with the people they serve in Indiana and New York City.
Deb Litzelman, MD, MACP, and her research team welcomed the offer to modify this survey tool to use with populations at high risk for COVID-19 in central Indiana. These on-going interventions enroll patients older than 65 years old (GWEP); African-American, and Hispanic women of child bearing age and their partners (WeCare); and women of childbearing age with substance use disorder and their partners (CARE). Enrolled patients in these three studies represent the some of the highest risk groups for COVID-19 infections and/or exposures since many live in multi-generation households and some are living in hotels or are homeless as a consequence of loss of employment or diminishing social services during the pandemic. Following Goodrich’s study protocol, Litzelman’s team will administer a modified version of the survey longitudinally to study participants.
The Pediatric, Adolescent and Young Adult HIV program at the Jack Martin Fund Clinic of the Mount Sinai Hospital in New York is also using a slightly modified version of the survey. They are enrolling youth between the ages of 12 and 24, hoping to assess their knowledge about COVID-19 and learn how the epidemic has affected their ability to take care of their HIV infection as well as their personal and financial situation. “Although we did some modifications to the original survey to make it relevant to the New York context, the changes that were needed were really very few, which speaks about the shared problems of patients in different continents,” said Roberto Posada, MD, associate professor of pediatrics (infectious diseases) and medical education. “Our plan is to administer the survey once in the next few weeks, and a second time a few months later to see how things change as the COVID epidemic evolves,” he added.