Recovery from a substance use disorder has traditionally been conflated with “sobriety,” or total abstinence. In reality, many people recover while continuing to use drugs, but in safer, more moderate or more manageable ways that enable them to move on positively with their lives.
Holistic definitions of recovery have sought to reflect this, as many more people, including government officials, recognize the problems of an abstinence-only model. But treatment providers that are moving beyond abstinence-only face a new challenge: how to reliably measure recovery in a way that is multifaceted and person-centered.
A new study published in the journal Addiction reviewed 90 unique patient-reported outcome measures (PROMs)—questionnaires issued by providers, where people undergoing treatment report their physical health, relationships to substance use, quality of life and other important indicators.
Most notably, only two of the 90 PROMs were clearly developed with substantial input from directly impacted people.
While PROMs can promote a multidimensional understanding of recovery, they also have severe shortcomings. Most notably, only two of the 90 PROMs that the authors discovered were clearly developed with substantial input from directly impacted people.
“PROMs … help assess how things are going for a patient based on their own self-report as they receive treatment,” study co-author Dennis Pales, of the University of Colorado School of Medicine, told Filter. “This allows us to get good, objective data in a systematic way to guide treatment decisions based on how a patient is doing.”
According to the study, a typical PROM has around 16 items. While some ask general questions about the patient’s quality of life, most include specific items about substance use, psychological health, social relationships and physical health. Other common topics include time use, identity, financial stability and aspirations.
By measuring recovery across several domains, PROMs allow treatment providers to assess recovery in terms of wider wellbeing. Pales contrasted this with an abstinence-based approach, which centers around urine tests or other forms of drug screening.
“While those tools may have uses, they lack nuance,” he said. “They fail to encompass the full scope of what recovery might mean for somebody and can introduce stigma into patient care.”
PROMs also offer a standardized approach, helping treatment providers track a patient’s trajectory over time, though different areas of recovery might become more or less salient as a person progresses towards their goals.
While PROMs are poised to reduce stigma around continuing drug use in recovery, they have yet to achieve their full potential. The study troublingly revealed how rarely these tools were described as being developed with input from people with living experience.
Pales noted that the figure of just two PROMs out of 90 might be an underestimate; some researchers may have consulted the community but omitted that detail when describing their approach. Even so, he suspects that many PROMs are missing this crucial perspective.
“Integrating people who use drugs into the process of developing PROMs can allow for an assessment of recovery that is more comprehensive and grounded in things that are most important to people seeking care,” he said. “[Things] that clinicians, researchers or whoever’s developing the PROM may not be attuned to.”
“It may be an outstanding arrest warrant, a fine, child custody. Those kinds of things are important to get back to a life that is meaningful and manageable for you.”
One of the two PROMs that definitely incorporate lived perspectives is the Response to Addiction Recovery (R2AR), developed by Brandeis University professor Dr. Sharon Reif with Elisabeth Okrant and Constance Horgan.
Reif told Filter that interviews and focus groups with people in recovery helped her team identify important domains that previous PROMs had not adequately captured, such as spirituality and legal challenges.
“[W]e want to highlight where you’re going and how you’re getting better in your recovery,” she said. “It may be an outstanding arrest warrant, it may be a fine, it may be child custody. Those kinds of things are important to get back to a life that is meaningful and manageable for you.”
To capture the richest possible picture of recovery, Reif and her team sought feedback from providers as well.
“[P]roviders don’t always have lived experience—sometimes they do—but they’ve also worked with people for a long time,” she explained. “They have some insights that people … early in their stages of recovery may not see in the same way.”
While bringing these diverse perspectives into PROM development has major advantages, it can also introduce conflicts. Reif recalled that the spirituality item was particularly controversial: Some people insisted it was an essential part of recovery, while others felt it was irrelevant or inappropriate.
“Things have definitely changed in a … direction that looks at recovery multi-dimensionally. But there’s definitely still room to grow.”
Even when everyone agrees, length can quickly become problematic. With 20 items, Reif’s PROM is longer than most, and it continues to grow as her team pilots it across new sites. Including many items represents a broader range of goals, but it also makes a PROM unwieldy.
“[The length] is fine if you’re in a research study, but it’s really hard if you’re just doing something for yourself or in the course of a clinical meeting,” Reif said. She hopes to eventually narrow down the list, while still ensuring it represents diverse interests.
Despite their present shortcomings, Pales sees an important role for PROMs as treatment providers increasingly move away from abstinence models. He’s especially encouraged by recent efforts to expand the definition of recovery and set specific standards for what constitutes meaningful improvement.
“Things have definitely changed in a more comprehensive direction that looks at recovery multi-dimensionally,” he said. “But there’s definitely still room to grow.”
Photograph via PxHere/Public Domain