People with Substance Use Disorders Say Survival and Improved Quality of Life Are Top Priorities in New National Study 

Results from first national study to ask patients about priority treatment outcomes suggest changes are needed in research, services and policy  

FOR IMMEDIATE RELEASE 

April 26, 2021 

CONTACT: Kathy Melley, (617) 791-0708 

(BOSTON, MA) – People with substance use disorders say survival and improved quality of life matter more to them than completely stopping all drug and alcohol use, according to a new first-ever national study to identify treatment outcomes prioritized by people with substance use disorders across the nation. The research was conducted by Community Catalyst, Faces & Voices of Recovery and the American Society of Addiction Medicine (ASAM) and guided by a National Peer Council of people with lived experience of substance use disorders, as part of the Patients Lead project, which aims to refocus research, treatment and public policy on patient-identified outcomes to more effectively address the national substance use disorders epidemic.  

More than 20 million Americans have substance use disorders, and during COVID, overdose deaths are rising and treatment access is harder. Substance use disorders are marked by frequent recurrences and a long-term path to wellness, making it critical to identify how to achieve better long-term outcomes. 

“People with substance use disorders are too often left out of important policy decisions that affect their lives, especially with regard to the design of and desired outcomes for treatment and recovery programs,” said Alice Dembner, study coauthor and director of the Substance Use Disorders and Justice-Involved Populations program at Community Catalyst. “Centering these decisions on what matters most to people with substance use disorders themselves can result in more meaningful research results, more effective service provision, better outcomes for patients, and a healthier society.”   

The two-year study engaged nearly 900 people with lived experience of substance use disorders through a national online survey, focus groups and the National Peer Council. The findings show individuals most care about survival, improved quality of life and mental health, reducing harmful substance use, meeting their basic needs, increasing their self-confidence/self-efficacy, and increasing their connection to services and supports.  

“There’s a widespread assumption that treatment should focus on achieving abstinence. But this study shows that the field needs to focus on keeping people alive and helping them improve their quality of life,” said Phillip Rutherford, Chief Operating Officer, Faces & Voices of Recovery. “Helping people help themselves is also critical for their long-term recovery, particularly increasing their connection to peer recovery services.” 

For the vast majority of respondents (80 percent), the impact of the COVID-19 pandemic did not change the treatment outcome priorities they identified prior to the pandemic. However, the 20 percent of people who prioritized different outcomes during the COVID-19 pandemic said quality of life became less important while connection to recovery support services, and taking care of basic needs, became more important. 

“We believe the study results underscore the need to evaluate substance use disorders treatment and services on how well they achieve these outcomes, which will help improve quality of services,” said Dr. Chinazo Cunningham, Professor of Medicine, Montefiore Health System and Albert Einstein College of Medicine. “This will also provide individuals and families with the information they need to find treatment best suited to their needs.”  

Findings also varied across race, ethnicity and gender, which demonstrate the need to reshape research, services and policies to achieve patient priorities as part of larger efforts to address structural inequities. These findings also underscore the importance of providing culturally and linguistically effective services tailored to each individual’s desired outcomes and intersecting identities.  

Based on the findings, the Patients Lead National Peer Council and project staff recommend a broad range of changes in approach by policymakers, providers and researchers, including: 

  • Policymakers should increase funding for the full continuum of services, from prevention and early intervention to inpatient and outpatient treatment, to residential services and long-term peer recovery supports. They should also target funding for harm reduction programs that focus on keeping individuals alive and reducing self-harm, such as overdose prevention and syringe services.  

  • Service providers should clarify each individual’s desired treatment and recovery goals and adjust services to meet those goals. Mental health supports should be integrated even for individuals without a documented mental illness diagnosis.  

  • Researchers should investigate which treatment and recovery support services, including peer services, best achieve the outcomes patients want. They should also stratify this research by race/ethnicity and gender to inform clinical and non-clinical recommendations and policy solutions that address systemic inequities.  

Patients Lead is funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award.  The views, statements and opinions presented in this report are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. 

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Community Catalyst is a leading non-profit national health advocacy organization dedicated to advancing a movement for health equity and justice. We partner with local, state, and national advocates to leverage community power so all people can influence decisions that affect their health. Health systems will not be accountable to people without a fully engaged and organized community voice. That’s why we work every day to ensure people’s interests are represented wherever important decisions about health and health care are made: in communities, statehouses, and on Capitol Hill. For more information, visit www.communitycatalyst.org. Follow us on Twitter @CommCatHealth.  

The American Society of Addiction Medicine (ASAM), founded in 1954, is a professional medical society representing over 6,600 physicians, clinicians and associated professionals in the field of addiction medicine. ASAM is dedicated to increasing access and improving the quality of addiction treatment, educating physicians and the public, supporting research and prevention and promoting the appropriate role of physicians in the care of patients with addiction. For more information, visit www.ASAM.org 

Faces & Voices of Recovery is the nation's leading grassroots recovery advocacy organization. They are dedicated to changing the way addiction and recovery are understood and embraced through advocacy, education and leadership. For more information, visit https://facesandvoicesofrecovery.org  

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