Background:
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.
Aim:
We aimed to develop and describe an evidence-based model of supportive and palliative care for integration into existing neuro-oncological services.
Methods:
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.
Results:
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.
Conclusions:
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.