COVID-19 Pandemic Impact on Patients, Families and Individuals in Recovery from Substance Use Disorders
COVID-19 Survey Overview
The Addiction Policy Forum conducted a pilot study to better understand the impact of COVID-19 on individuals with substance use disorders (SUDs) and to inform subsequent studies. A web-based survey was administered to our network of patients, families and survivors between April 27 and May 8, 2020. The survey was completed by 1,079 SUD patients and impacted individuals whose responses were included in the analyses for this report. An additional 533 individuals partially completed the survey. The research provides insight into the experiences of patients, those in recovery and family members on the emotional and health consequences of COVID-19, including overdose rates and barriers in safely accessing care during the COVID-19 pandemic.
Twenty percent of respondents reported increased substance use since the COVID-19 pandemic began.
One in three respondents (34%) report changes in treatment or recovery support services due to the COVID-19 pandemic. Fourteen percent reported being unable to access needed services.
Three percent of respondents (3%) reported a non-fatal overdose and 1% reported a fatal overdose since the pandemic began. The South Atlantic region reported the greatest number and percent of overdoses.
The top emotions reported by respondents are worry (62%), sadness (51%), fear (51%) and loneliness (42%).
Eighty-seven percent of those who report access disruptions (n=266) also report emotional changes since the pandemic began, compared to 72% of those who do not report access disruptions (n=806).
Forty-eight percent of patients and families reported fear of becoming infected with COVID-19 as a top concern, followed by spreading the virus (46%) and social isolation (40%).
Caveats and Limitations:
Survey respondents were predominantly white (88%), non-Hispanic (88%), female (66%), over the age of 26 (95%), and more than half had college degrees or higher. Findings should be interpreted within that context and may not represent the broader community of those impacted by SUD.
This survey was designed to be a rapid assessment of the impact of COVID-19 on the SUD community and to inform additional research. Future studies will include a larger, representative sample to uncover individual, social, cultural, economic, geographic, and other factors that interact with both SUD and COVID-19.
Respondents from a Broad Cross-Section of SUD Impact
Patients and family members wanted to share their experiences.
The survey included a range of U.S. addiction patients who have been diagnosed with a SUD, are in recovery, have an active SUD, as well as family members impacted by addiction. Most respondents selected multiple categories to describe personal and family SUD history.
Fifty-four percent of respondents are in recovery from a SUD, 40% have a first- or second-degree family member with a SUD, 11% of respondents are currently using substances and 8% are receiving treatment. Taken together, 73% of responses represent patient perspectives and 40% represent family members
Polydrug Use Top Concern; Alcohol, Opioids and Stimulants Follow
Following broader trends, most people with SUD are impacted by multiple substances.
To more deeply examine substance use trends among people with SUD themselves, these participants were then categorized into one of three groups: active SUD, in treatment, and in recovery. For additional detail, see methodology.
Of respondents with an active SUD (n=117), the most prevalent substance reported was alcohol (64%), followed by marijuana and nicotine (both at 39%) and stimulants (33%). Fifty-eight percent reported polydrug use, meaning more than one substance of issue was reported, while 42% reported a single drug of concern.
Of respondents receiving treatment for a SUD (n=81), 63% reported polydrug use, while 35% reported a single drug of concern. The most prevalent substance reported was opioids (68%), followed by stimulants (41%) and alcohol (40%).
For individuals in recovery (n=568), alcohol was the most prevalent substance reported (71%), followed by stimulants (52%) and opioids (48%). Seventy percent reported polydrug use, while 27% reported a single drug of concern.
Treatment disruptions are common, and support groups are particularly important to patients and families.
One in three respondents (34%) report changes or disruption in treatment or recovery support services due to the COVID-19 pandemic.
14% say they were unable to receive their needed services.
...7% say they are unable to access in-person support groups.
…2% and 3%, respectively) say they were unable to access syringe or naloxone services specifically.
How Treatment is Changing
Virtual transitions, changed medication schedules, and feeling unsupported.
Among patients and families reporting changes in their service delivery, many report accessing modified access points for treatment and recovery services, from telehealth availability to alternate
ways of acquiring medication for addiction treatment (MAT).
18 % report they are receiving services by telephone or online (telehealth),
4% report access to medications via curbside pickup or delivery; and
3% report ability to access more doses of take-home medication at one time than usual.
Respondents cited the lack of access to in-person 12-step or support group meetings as a primary concern through write-in responses and additional feedback. Comments on changes to services included: “The closing of Recovery drop-in, peer-run recovery centers. No ability to socialize/connect or get peer support.” Another respondent commented: “Meetings have all been reduced to Zoom and it has had an impact on feeling supported by peers and getting a good recovery message.” A family member participant added, “the inability of attending meetings in person and meeting a sponsor in person has been very difficult for my child.” Another respondent added: “Doing online meetings are not the same as going to a meeting.”
Note that even among responses to our online survey, 2% of participants reported that they do not have in-home high-speed internet access, which is a challenge for telehealth service access.
Top concerns are related to getting or spreading COVID, but patients and families are also worried about isolation, job loss and hospitalization.
While only one respondent reported a diagnosis of COVID-19, 9% report symptoms though they never received testing. Fever, cough and flu-like symptoms were the most common symptoms reported.
Forty-eight percent of patients and families report fear of becoming infected with COVID-19 as a top concern, followed by spreading the virus (46%) and social isolation (40%).
Treatment disruptions exacerbate the emotional stress of the pandemic.
Overall, 74% of respondents said they had noticed changes in their emotions since the pandemic began. The percentage of those who reported emotional changes was higher among those who have had changes in treatment access. Among those who reported changes in treatment access, 87% report emotional changes.
Twenty-four percent of respondents indicate that their/their family member’s substance use has changed because of COVID-19 – 20% reported increased use and 4% reported a decrease.
Nationwide three percent of respondents report a non-fatal overdose and 1% report a fatal overdose has occurred since the pandemic began. The South Atlantic region reported the greatest number and percent of overdoses. The region includes Delaware, Maryland, Virginia, West Virginia, North Carolina, South Carolina, Georgia, Florida and the District of Columbia.
The top emotions reported by respondents are worry (62%), sadness (51%), fear (51%) and loneliness (42%).
Although the survey did not include questions about suicidal ideation, nine respondents submitted open comments expressing concern about suicide thoughts and behaviors among family members, friends and community. One respondent reported the suicide death of a parent with SUD.
The need for more research
To better understand the impacts of COVID-19 on the broad and diverse community of people impacted by SUD, and to answer the questions patients and families still have, we need more research.
The responses to this initial study indicate overwhelming unmet needs of individuals with active SUDs, those in treatment and recovery, and their families. Future research will need to include a larger, representative sample of individuals impacted by SUD to help us understand the variety of pandemic-related impacts that interact with individual, social, economic, geographic and other factors.
How do pre-existing health vulnerabilities and economic disparities among SUD patients impact risk of and care for COVID-19? Participants are especially worried about becoming infected with and spreading COVID-19. Are those with substance use disorders especially vulnerable to COVID-19, either clinically or socially, given preexisting health and economic disparities? Are SUD patients, who are commonly uninsured, able to access testing and treatment when they have COVID-19 symptoms? If they do pursue care, is the clinical care they receive impacted by the stigma associated with their SUD?
What are the effects of sudden changes in treatment, including virtual options, curbside pickup, and an overall reduction in in-person services? Responses here suggest that changes in treatment are associated with distress, but clinical research is needed to understand whether these emotional changes come with poor treatment outcomes. As clinicians shift to offering telehealth services, curbside pickup, and extended dosing for medications, what are the effects on patients? Do treatment and recovery disruption fears top COVID infection fears?
What are the impacts of COVID-19 on overdoses, at a regional and national level? These data cannot settle the question of whether overdoses are increasing, or becoming more dangerous, because of COVID-19. However, they suggest a decrease in access to naloxone. Do rates of overdoses, or overdose fatalities, change as drug supply chains shift? Do overdoses become more likely to be fatal as people with SUD report lower access to naloxone? Is there evidence of reluctance among first responders to administer naloxone for fear of COVID transmission?
How does COVID-19 impact the mental health needs of SUD patients? Respondents who expressed emotional changes related to the pandemic were worried, sad, afraid and lonely. This study was not designed to assess the prevalence of specific mental health crises, but future research should investigate whether these emotional changes coincide with broader mental health challenges. Are those with SUD particularly prone to mental health crises during this period? Are there any services that can be deployed to meet the mental health needs of SUD patients and their caregivers?
What are the effects of isolation and overall stress on long-term recovery? After acquiring or spreading COVID-19, respondents’ top concerns were social isolation and economic turmoil. Overall, respondents indicated that the sudden changes associated with COVID-19 had challenged even those in long-term recovery. How risky is this environment for those in long-term recovery? How can we help those in recovery with these worries?
Data provided by patients and families as part of this project allow for a greater understanding of their experiences and opinions on addiction-related issues and give voice to patients and families. Due to the urgent need to understand the impact of COVID-19 on individuals with a SUD and their families, this survey was deployed through an anonymous survey and distributed via email to the APF national network and promoted through APF social media accounts to recruit respondents.
All research protocols, instruments and communication materials were reviewed by the IntegReview Institutional Review Board.
The survey population comprises individuals who meet the following criteria:
Individuals with an active substance use disorder (SUD), in recovery from a SUD, receiving treatment for a SUD or a family member impacted by addiction.
Over the age of 18
The data were collected between April 27, 2020 and May 8, 2020. A total of 1,079 participants responded to the survey. Demographics are given in the following table.
Categorization of SUD Impact
Participants were categorized into a single SUD impact category to better characterize trends among patients with an active SUD, those in treatment, and those in recovery. The "Active SUD" group includes only those who endorsed "currently using substances". Remaining participants who endorsed "receiving treatment for substance use disorder" were categorized as "In Treatment". Finally, remaining participants who endorsed "in recovery from a substance use disorder" were categorized as "In Recovery."
Family Members include Parents, Siblings, Spouses
Of the 411 family members surveyed, 43.8 percent have a child with a SUD; 22.9% report a sibling with SUD; 17.8% report a spouse with SUD.
About the Addiction Policy Forum
The vision at the Addiction Policy Forum is to eliminate addiction as a major health problem by translating the science of addiction and bringing all stakeholders to the table. The organization works to elevate awareness around substance use disorders and help patients and families in crisis. Founded in 2015, Addiction Policy Forum empowers patients and families to bring innovative responses to their communities and end stigma through science and learning.
Supported in part by the National Institute on Drug Abuse (NIDA), National Institutes of Health (NIH), U.S. Department of Health and Human Services (HHS).
This white paper was reviewed by the Addiction Policy Forum Scientific Advisory Board.
Addiction Policy Forum’s Scientific Advisory Board
Dr. Mark Gold, MD
Dr. Nicole Avena, Ph.D.
Dr. James Berry, D.O.
Dr. Brian Fuehrlein, Ph.D., M.D.
Dr. Marc Potenza, Ph.D, M.D.
Addiction Policy Forum, May 2020, “COVID-19 Pandemic Impact on Patients, Families and Individuals in Recovery from Substance Use Disorder.”
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