TITLE: Development of a core outcome set for effectiveness trials of interventions to prevent and/or treat delirium in palliative care (Del-COrS)
We are currently looking for volunteers including: patients, family members, carers, healthcare professionals and researchers with experience of delirium in palliative care.
Participants would complete two online surveys to establish their views on the outcomes that are important to include in future studies of interventions to prevent or to treat delirium in palliative care. We will subsequently invite participants to a meeting to discuss the findings and vote on outcomes they consider important.
Our goal is to develop international consensus on a core outcome set for research studies of treatments within a palliative care setting to prevent, and/or treat delirium.
Researchers look at the effects of potential treatments on patients by measuring an ‘outcome’. For example, in a study of how well a new delirium treatment works in a palliative care setting, an ‘outcome’ might be: whether a person hurt themselves because of delirium.
When a set of main outcomes has been agreed for a health condition, it’s called a ‘core outcome set’. This would allow all studies of delirium in palliative care to be compared and combined.
Please contact Dr Anna Bryans (Research Team Member) at email@example.com if you are interested in participating and pass on this information to anyone who may wish to take part.
Would you like to learn more about immunotherapy use and trials in cancer and in palliative care?
Immunotherapy Symptoms Clinical Trials: a new paradigm forum
Palliative, supportive and cancer care professionals are invited to attend the VCCC and CST co-hosted Immunotherapy Symptoms Clinical Trials: a new paradigm forum to progress clinical trials concepts in this evolving oncology field, recognise achievements, celebrate success and make connections for future directions.
Palliative care progress and achievements
The VCCC Building Trial Group Capability Program initial investment is focused on developing the palliative care group as a key priority area. The group’s development and activities have been underway for more than 12 months; it is timely to celebrate progress and achievements.
Delirium robs dying people of their autonomy, dignity and last conversations with loved ones, at a time when every moment is precious.
Symptoms are highly distressing to experience and watch. Confusion, incoherent communication, poor attention, agitation, drowsiness and hallucinations are some markers of this common complication for people dying in hospital from cancer and other advanced illnesses. On average one in three people in end-of-life hospital care are affected.
Doctors commonly prescribe antipsychotic medications to try to relieve these symptoms. However, our study just published in JAMA Internal Medicine, raises serious concerns about their safety and efficacy.
So, what are we to do for people experiencing delirium, who are robbed of their mental awareness and ability to communicate?
Kasia’s research aims to improve sustainable acute care health delivery for an ageing population, while her clinical experience includes general medical and acute palliative care. In her PhD, Kasia developed an approach to measure nurse-sensitive outcomes, which is currently being used to evaluate a Government-funded implementation of a cognitive identifier. Kasia has a passion for identifying and researching the structures and processes which impede or enable quality patient care, and sharing her learning and inquiry with nursing students, industry and professional groups. Here, Palliverse asks her about her latest research project and dipping her toe into the world of social media.
It doesn’t take an expert to conclude that the palliative care workforce is dominated by women. Globally, women make up the vast majority of the paid palliative care workforce. Ninety percent of the nurses and health care assistants involved with end of life care are women and there are a higher proportion of women in Palliative Medicine than in most other specialities. Over half of Palliative Medicine physicians in Australia, for example, are women. This is in addition to the vast (and ever-increasing) number of women who provide unpaid care for their dying relatives. It is hardly a stretch, then, to regard palliative care as essentially a woman’s domain. Indeed, with the rise in population of the oldest-old, the need for more people – presumably women – to provide palliative care in hospice, aged care and community settings will continue to grow.
I am the program manager for the Palliative Care Research Network Victoria (PCRNV).
What does PCRNV do?
We try to gain funding to conduct clinical and community intervention research. The PCRNV also provides an opportunity to network and collaborate with other palliative care researchers through PCRNV forums and workshops.
We also help with access to a variety of PCRNV funding schemes including; PhD scholarship, small project and travel grants. There can be support with developing your research idea into a potential project and grant proposals via the PCRNV Concept Development Workshops and also mentoring.
But, it’s not right to do research on people who are dying, is it?
I feel like such a fraud. What am I doing writing a guest post for Palliverse, when I am a doctor who rarely provides palliative care? My justification for writing here is that it’s this very sense of uncertainty and underqualification that I’m feeling which is the subject of my post.
I’m a “general practitioner” — a “GP” as we’re called here in Australia. If you’re reading this post from North America, think “family physician” — it means much the same thing — but for convenience I’ll use the term “GP” today.
Prof Patsy Yates sharing her reflections on setting up a NHMRC Centre of Research Excellence in End of Life Care at the PCRNV Breakfast Forum
For the third year in a row, the Australian Palliative Care Research Colloquium was held at the Rendezvous Grand Hotel in Melbourne on October 22-23. The meeting was once again preceded by a breakfast forum hosted by Palliative Care Research Network Victoria (PCRNV), which served as a tempting entrée to the two-day main course of fantastic presentations and workshops exploring a diverse range of topics pertaining to palliative care research. Conversations about research continued over tea and meal breaks, next to quality poster presentations, and during the convivial conference dinner on the banks of the Yarra. Continue reading →