Salmi L, Otis-Green S, Hayden A, Taylor LP, Reblin M, Kwan BM. Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach. Neuro-Oncology Practice, 2024;, npae052.
doi: doi.org/10.1093/nop/npae052
Malignant brain tumors (brain cancer) significantly affects the quality of life (QoL) of patients and their care partners, particularly in areas like cognition and communication. Palliative care (PC) aims to improve QoL for patients and care partners, but how it can best serve brain cancer patients is unclear. This study aimed to find out the top research priorities for palliative care in brain cancer using a collaborative, community-driven approach.
The study involved creating a long-term advisory group and using various engagement methods, including social media, over a year. They gathered insights from the community about the QoL needs of brain cancer patients and mapped these to proposed key components of brain cancer palliative care.
Around 500 people, including patients, caregivers, and healthcare professionals, participated. The main research priorities identified were: 1. Testing early introduction of PC services tailored to the unique QoL needs of brain cancer patients and caregivers. 2. Addressing the changing QoL needs and concerns of brain cancer patients over time. 3. Customizing existing services to better meet patient needs. 4. Involving a diverse team of healthcare professionals in care. 5. Finding the best timing for introducing PC services.
This was the first study to explore brain cancer patient and caregiver needs and palliative care services in this way. The brain tumor community is calling for research to test palliative care service models that include these essential elements to better support brain cancer patients. Read more.
