The JLA Neuro-Oncology Priority Setting Partnership (link) identified the question “Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumours? “ This area is therefore now a priority area for clinical research.
There is an identified need for early, high quality, early neuro-rehabilitation after surgical resection and early palliative care involvement and yet few multidisciplinary teams routinely include palliative care representatives or rehabilitation specialists in their core group.
Supportive and palliative care is the holistic care of patients with life limiting conditions and aims to improve the quality of patients’ lives and support those caring for them. Palliative care historically has usually only been given towards the end of the someone’s illness; however, in certain studies in patients with other types of tumours, it has been shown that receiving palliative care at the start of one’s illness not only improves patient quality of life throughout their illness but can also prolong their life. Research in patients with brain and spinal tumours commonly focuses on cancer treatment, but not on improving symptoms or quality of life. The aim of the question is to see whether referral to specialist palliative care services at the start of the disease improves quality of life in patients with brain or spinal cord tumours.
‘Supportive Care in Cancer is the prevention and management of the adverse effects of cancer and its treatment. It includes management of physical and psychological symptoms and side effects across the continuum of the cancer experience from diagnosis through anticancer treatment to post- treatment care. Supportive rehabilitation, secondary cancer prevention, survivorship and end of life care are integral to Supportive Care.’
The NCRI will hold an “Incubator Day” in 2016, to examine the current stage of research and advise on best design of any future study in the area. This will be lead by the NCRI Brain Clinical Studies Group and NCRI Primary Care CSG.
If interested in supporting this research area, or learning more, please contact the NCRI Brain Supportive & Palliative Care Group and leave details of your interest. (email: S&PC@neuro-oncology.org.uk)