"I'm a Survivor": Perceptions of Chronic Disease and Survivorship Among Individuals in Long-Term Remission from Opioid Use Disorder

Abstract

Background: While opioid use disorder (OUD) is prevalent, little is known about what patients with OUD in sustained remission think about the chronic disease model of OUD and their perspectives of the cause, course, and ongoing treatment needs of their OUD.

Objective: To (1) examine patient perceptions of the chronic disease model of addiction and disease identity and (2) use an explanatory model framework to explore how these perceptions inform ongoing treatment needs and help maintain abstinence.

Design: Qualitative study of a cross-sectional cohort of patients with OUD in long-term sustained remission currently receiving methadone or buprenorphine. Participants completed a single in-depth, semi-structured individual interview.

Participants: Twenty adults were recruited from two opioid treatment programs and two office-based opioid treatment programs in Baltimore, MD. Half of the participants were Black, had a median (IQR) age of 46.5 (43-52) years and the median (IQR) time since the last non-prescribed opioid was 12 (8-15) years.

Approach: Hybrid deductive-inductive thematic analysis of the transcribed interviews.

Key results: Some participants described a chronic OUD disease identity where they continue to live with OUD. Participants who maintain an OUD identity describe inherent traits or predetermination of developing OUD. Maintaining a disease identity helps them remain vigilant against returning to drug use. Others described a post-OUD/survivor identity where they no longer felt they had OUD, but the experience remains. Each perspective informed attitudes about continued treatment with methadone or buprenorphine and strategies to remain in remission.

Conclusions: The identity that people with OUD in sustained remission maintain was the lens through which they viewed other aspects of their OUD including cause and ongoing treatment needs. An alternative, post-OUD/survivorship model emerged or was accepted by participants who did not identify as currently having OUD. Understanding patient perspectives of OUD identity might improve patient-centered care and improve outcomes.

Keywords: buprenorphine; chronic disease; methadone; opioid use disorder; survivorship.

Figure 1

Conceptual framework relating opioid use disorder (OUD) disease identity, origin or cause of OUD, attitudes toward opioid agonist treatment (OAT), and maintaining abstinence.