Young people with lived experience, caregivers, clinicians and researchers have come together to create a new way of ranking outcomes for psychosis treatment, opening the door for a more holistic understanding of recovery in psychosis medication trials.
The new ranking system – the Desirability of Outcome Ranking, or DOOR – part of a study published in Schizophrenia Bulletin Open, takes a multifaceted approach to measuring the three outcomes considered most important to young people, caregivers and clinicians: quality of life, psychotic symptoms and medication side effects.
Lead author and Early Psychosis Senior Research Fellow at Orygen, Dr Alexandra Stainton, said that currently, clinical trials of psychosis medication focused on symptom reduction or relapse as the most important outcomes, but people with lived experience emphasised broader definitions of recovery.
"For people with experience of psychosis, recovery is about more than just reducing symptoms," Dr Stainton said.
"It's also about things like regaining independence, being able to participate in meaningful activities, and feeling a sense of autonomy.
"While symptom reduction is important, recovery is also about quality of life, social functioning, and how easy or difficult people find treatment and side-effects."
The study noted that different groups can also have different perspectives when it comes to treatment outcomes.
“For example, clinicians and family members might prioritise reduction of symptoms, while people with lived experience might focus more on life satisfaction, medication side effects, relief from depression and anxiety, and improvement in cognitive function,” Dr Stainton said.
"The DOOR aims to take all these perspectives into account, and can include combinations of benefits and harms, providing a more nuanced and personalised way of understanding recovery."
Design of the DOOR was undertaken with two advisory groups – one involving young people with lived experience of psychosis and people with lived experience as a caregiver, and the other made up of clinicians working within early psychosis services.
Advisors were recruited from the Australian Early Psychosis Collaborative Consortium (AEPCC) Lived Experience Network, and were considered research partners rather than research participants.
The study used an iterative co-design process, and the final DOOR ranking system includes 48 levels, with levels 1-12 representing the most desirable outcomes, and levels 37-48 the least desirable.
Dr Stainton said that the DOOR method had been used in other health fields to measure outcomes for things like antibiotic response, epilepsy and obstetric care.
"This is the first study to design a DOOR for use within mental health trials, and we hope it offers a more inclusive and holistic way to measure what's truly important to young people, caregivers and clinicians," Dr Stainton said.
"Working alongside people with lived experience is crucial to recovery-focused psychosis research, and the insights we've gained through this work could have important implications for how we approach treatments in the future.
"The next step is to examine the ranking system's performance in clinical trials of medication for psychosis, with the ultimate aim of expanding our understanding of recovery and offering more individualised, person-centred care."