Delirium Research Priorities

The Future of Delirium Research

Delirium is common, serious and distressing condition, but there is still limited research on delirium. To propose an agenda for delirium research with the best chance of improving day-to-day delirium prevention and care, Professor Alison Mudge and Professor Meera Agar have led a team conducting a research prioritisation process facilitated by the James Lind Alliance (JLA). We asked patients, carers and healthcare staff across Australia and New Zealand what questions should be answered by research to improve the care we provide for people with delirium. Here is what we heard:

How did we decide?

The project was a collaboration with the James Lind Alliance, a UK based non-profit organisation that works with partners to help set health research priorities through a structured and highly transparent process. It was overseen by a binational steering committee with equal representation from clinicians and patients and carers.

In our first survey, we invited patients, carers, and healthcare staff to tell us what questions about delirium they thought were most important for research to answer. We received 513 unique questions from 186 people across Australia and New Zealand. The steering committee carefully reviewed all questions and combined them into 42 summary questions. Our research team then undertook a detailed review of published high-level evidence (such as systematic reviews) to confirm which questions have not been fully answered by research yet.

In our second survey, we invited patients, carers and healthcare staff to review 40 unanswered or partially answered questions and select the ‘top ten’ questions that were important to them. Responses from 315 patients, carers and healthcare staff were collated to find the top 21 scoring questions, in a process that made sure that the voice of patients and carers and healthcare staff were respected equally.

In a final workshop, 2 patients, 9 carers and 10 healthcare staff participated in a facilitated consensus process over two days to rank these top 21 questions. Full details of the project are available at Delirium (Australia and New Zealand) | NIHR JLA.

And the next 10 Questions for Research

There were many other questions that did not make it into the collective top ten but were still important to our participants. The following questions were ranked in the next ten. The full set of questions are available at Delirium (Australia and New Zealand) | NIHR JLA

11. How aware are healthcare staff about delirium and what are the barriers and enablers to their awareness and understanding?

12. What are the best ways to support patients and their carers after an episode of delirium, including after hospital discharge?

13. What are the best approaches to improve longer-term outcomes in people experiencing delirium?

14. What are the best non-medication approaches (e.g. mobility, nutrition, cognitive and sensory interventions, sleep interventions) for treating delirium and how are they best delivered?

15. How aware are high risk groups (e.g. people living with dementia, serious illness or at end of life) about delirium, and what are the best ways to raise awareness?

16. What are the best ways to communicate with someone with delirium?

17. What are the best ways to reduce distress in people with delirium?

18. What features of the physical environment assist in preventing and managing delirium?

19. What is the best way to assess whether someone has recovered from delirium?

20. What factors make it easier or harder to share information about delirium with patients and carers?

What happens next?

We encourage you to use these questions to think, talk and reflect on delirium to raise awareness of this distressing condition in our hospitals, health services and communities.

We will share our findings with funding agencies to help them decide the best delirium research to fund.

We encourage new and experienced researchers to use the top ten questions to shape their research plans and grants, and to involve patients, carers and healthcare staff in their research program. Some questions have been partly answered but still need to be applied to other settings and groups. For example, there is lots of research on tools to diagnose delirium in older people in hospital, but scant research in younger patients, in people from different cultures or languages, or in other settings such as residential aged care homes. There is also little research on how to make sure that these tools are used in a way that supports timely and reliable diagnosis in practice.

And there are plenty of things we DO know what to do about delirium while new research is underway. Healthcare staff can screen for delirium, investigate and treat the condition that brought it on, engage and inform patients and carers, provide extra support with everyday care like walking and eating, avoid drugs that worsen delirium, ensure they share information on cognitive function at handovers of care, work as a team and show compassion. Carers can recognise changes in those they care for, share information about the person, ask for information about delirium, help maintain routines, support everyday care, ensure glasses, hearing aids and mobility aids are available, support decisions, and provide reassurance

Thanks to our participants and partners!

We would like to thank all members of the steering committee, survey participants, workshop participants and partnering organisations, the James Lind Alliance, Queensland Health Fellowships, the Royal Brisbane and Women’s Hospital SERTA Grants, the University of Technology Sydney and the University of Queensland who all contributed to the success of this project.

Who can I contact for more information?

If you need more information or if you would like a paper survey, please contact:

Liliana Botero

Project Coordinator,

Royal Brisbane and Women's Hospital

liliana.boterozapata@health.qld.gov.au

Professor Alison Mudge

Project Lead,

Royal Brisbane and Women's Hospital

Alison.Mudge@health.qld.gov.au