The supportive and palliative care needs of patients with high-grade malignant glioma and their carers are increasingly recognised internationally, but few guidelines exist to recommend best palliative and supportive care practice across the illness trajectory.
We aimed to develop and describe an evidence-based model of supportive and palliative care for integration into existing neuro-oncological services.
Mixed methods sequential approach involving three phases: (1) Defining needs and experiences via a systematic literature review and qualitative study with 10 patients, 23 carers and 36 health professionals; (2) Describing service use via an epidemiological cohort study (N=1,821) of incident malignant glioma cases in Victoria, Australia, over a 6-year period (2003-2009), using linked inpatient hospital, emergency and death data; and (3) Development of recommendations for practice improvement and formation of a model of supportive and palliative care across the illness trajectory.
The evidence base for improving care supports a new model which responds to this unique cancer trajectory involving rapid, unpredictable deteriorations; uncertain, but limited prognosis; and marked, often early, behavioural and cognitive changes. Four overlapping components appear critical to optimal patient care.
1. Coordination, continuity and support; proactively offered through a consistent contact that provides regular screening during tele-medicine reviews.
2. Staged information; routinely delivered with opportunity for carer education at key points including diagnosis, following first-line treatment, and at first recurrence.
3. Provision of supportive and palliative care services; including routine referral to palliative care at first recurrence, access to step-down longer term palliative care inpatient facilities with respite capacity, and outpatient allied health.
4. Education for HCPs; including awareness and advocacy for a more collaborative role of palliative care alongside acute providers.
These guidelines form an evidence-based and collaboratively developed model of palliative and supportive care for patients with glioma, with applicability to other tertiary neuro-oncology services.