Young people, their families and supporters are one step closer to having more say in the treatment decisions that affect them, with the announcement of major new funding for a pilot study assessing the Choices model of supported and shared decision-making in early psychosis care.
The new model has been co-produced in collaboration with young people with lived experience of psychosis, families, carers, clinicians and researchers, and has been designed to ensure young people are more meaningfully involved in decision-making about the use of antipsychotic medication in their treatment and recovery.
The Medical Research Future Fund (MRFF) grant will provide more than $770,000 over two years to trial the world-first model, and will also test the psychosis Desirability of Outcome Ranking (DOOR), a new way to measure outcomes which evaluates quality of life, psychosis symptoms and medication side-effects.
Lead investigator from Orygen, Professor Kelly Allott, said that currently, young people experiencing psychosis did not always feel involved in decision making about their treatment, or can be pressured to take medication without fully understanding the side-effects and benefits.
“Young people with psychosis have a right to make informed decisions about their treatment, but unfortunately this is often not the case,” Professor Allott said.
“This can often stem from a desire of health practitioners to minimise risk and prevent relapse, but the unintended consequences can be that young people experience mistrust, disengagement, and lack of autonomy.
“When young people’s preferences are not fully explored or supported by their treatment team, many cease taking their medication without medical guidance, increasing the risk of relapse and withdrawal.
“It’s vital that we better uphold patients’ legal and human rights to information, support and autonomy, and that we strive to better understand what’s important to young people in terms of their recovery.”
The Choices study has a particular focus on involving young people with lived experience, and the first phase of the research involved extensive consultation and co-design with the lived experience community, facilitated by the Australian Early Psychosis Collaborative Consortium (AEPCC).
AEPCC harnessed the power of their lived experience community via social media to recruit members for an advisory group made up of four clinicians, four caregivers of a young person with psychosis, and seven young people (aged 18-29) with lived experience of psychosis.
“We really prioritised working early and effectively with young people and families to inform the aims and methods of this study, and made sure we had a dedicated advisory group in place before the trial got under way,” Professor Allott said.
“It’s so important to take the time to develop these relationships, and deepen trust and engagement to ensure we’re doing meaningful research that actually has a real-world impact on how young people are supported and cared for.
“This new model will fill a critical gap in early psychosis care, empowering young people and clinicians to communicate effectively and transparently about the benefits and side-effects of medication, and will ultimately support the autonomy, individuality and values of those experiencing psychosis.”
The new study will be led by Orygen in partnership with AEPCC, Alfred Health, and the Australian Commission on Safety and Quality in Health Care. The research team includes investigators from Orygen, University of Melbourne, Alfred Health and University of Tasmania, as well as a lived experience advisory group.