Development of an addiction recovery patient-reported outcome measure: Response to Addiction Recovery (R2AR)

BACKGROUND: Recovery, a primary goal of addiction treatment, goes beyond abstinence. Incorporating broad domains with key elements that vary across individuals, recovery is a difficult concept to measure. Most addiction-related quality measurement has emphasized process measures, which limits evaluation of treatment quality and long-term outcomes, whereas patient-reported outcomes are richer and nuanced. To address these gaps, this study developed and tested a patient-reported outcome measure for addiction recovery, named Response to Addiction Recovery (R2AR). METHODS: A multi-stage mixed methods approach followed the Patient-Reported Outcomes Measurement Information System (PROMIS) measure development standard. People with lived experience (PWLE) of addiction, treatment providers, and other experts contributed to item distillation and iterative measure refinement. From an item bank of 356 unique items, 57 items were tested via survey and interviews, followed by focus groups and cognitive interviews. RESULTS: Face validity was demonstrated throughout. PWLE rated item importance higher and with greater variance than providers, yet both agreed that “There are more important things to me in my life than using substances” was the most important item. The final R2AR instrument has 19 items across 8 recovery domains, spanning early, active, and long-term recovery phases. Respondents assess agreement for each item as (1) a strength, and (2) importance to ongoing recovery. CONCLUSION: R2AR allows PWLE to define what is important to their recovery. It is designed to support treatment planning as part of clinical workflows and to track recovery progress. Inclusion of PWLE and providers in the development process enhances its face validity. Including PWLE in the development of R2AR and using the tool to guide recovery planning emphasizes the importance of patient-centeredness in designing clinical tools and involving patients in their own care. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13011-023-00560-z.