STEP 2: Presentation, initial investigations and referral
This step outlines the process for the general practitioner to initiate the right investigations and refer to the appropriate specialist in a timely manner. The types of investigations the general practitioner undertakes will depend on many factors, including access to diagnostic tests, the availability of medical specialists and patient preferences.
While symptoms are often non-specific, the following signs and symptoms should be investigated:
- increasing headaches, persistent new headaches, vomiting, unexplained morning headache
- seizure
- blackouts or other alterations in conscious state
- poor coordination
- visual deterioration or other focal neurological symptoms
- progressive weakness
- change in behaviour
- change in memory
- confusion, drowsiness
- speech disturbance
- other unexplained neurological symptoms including major personality/behavioural change.
The presence of multiple signs and symptoms, particularly in combination with other underlying risk factors, indicates an increased risk of high-grade glioma.
Presenting symptoms should be promptly and clinically triaged with a health professional.
All patients who present with focal neurological symptoms, a first seizure or new onset or recurrent headaches will require urgent neuroimaging and evaluation by a neurologist or neurosurgeon to establish the cause of these symptoms. If an initial CT scan of the brain is negative, but there is continuing clinical concern, specialist referral and/or MRI should be performed urgently – posterior fossa and temporal lobe lesions or more infiltrative lesions may be missed on a CT scan. Repeat MRI imaging with gadolinium contrast in four to eight weeks if symptoms do not resolve.
Many patients will present directly to an emergency department with a catastrophic new neurological problem or seizure and will require urgent neurosurgical evaluation.
All patients with suspected high-grade glioma should be referred to a neurosurgeon who works in an environment that can ensure ongoing care and is affiliated with a multidisciplinary team (WCMICS 2009).
Patients should be enabled to make informed decisions about their choice of specialist and health service. General practitioners should make referrals in consultation with the patient after considering the clinical care needed, cost implications (see referral options and informed financial consent), waiting periods, location and facilities, including discussing the patient’s preference for health care through the public or the private system.
Referral for suspected or diagnosed high-grade glioma should include the following essential information to accurately triage and categorise the level of clinical urgency:
- important psychosocial history and relevant medical history
- concomitant illness and medications
- family history, current symptoms, medications and allergies
- results of current clinical investigations (imaging and pathology reports)
- results of all prior relevant investigations
- notification if an interpreter service is required.
Many services will reject incomplete referrals, so it is important that referrals comply with all relevant health service criteria.
If access is via online referral, a lack of a hard copy should not delay referral.
The specialist should provide timely communication to the general practitioner about the consultation and should notify the general practitioner if the patient does not attend appointments.
Aboriginal and Torres Strait Islander patients will need a culturally appropriate referral. To view the optimal care pathway for Aboriginal and Torres Strait Islander people and the corresponding quick reference guide, visit the Cancer Australia website. Download the consumer resources Guide to best cancer care – Checking for cancer and Guide to best cancer care – Cancer from the Cancer Australia website.
If there is a high suspicion of high-grade glioma, patients should be referred to an appropriate neurosurgeon affiliated with a multidisciplinary team within 24 hours of the patient presenting with symptoms. Healthcare providers should provide clear routes of rapid access to specialist evaluation.
The patient’s general practitioner should consider an individualised supportive care assessment where appropriate to identify the needs of an individual, their carer and family. Refer to appropriate support services as required. See validated screening tools mentioned in Principle 4 ‘Supportive care’.
A number of specific needs may arise for patients at this time:
- assistance for dealing with the emotional distress and/or anger of dealing with a potential cancer diagnosis, anxiety/depression, interpersonal problems and adjustment difficulties
- assistance with developing strategies to compensate for any loss of cognitive function, behavioural disturbances and physical limitations
- management of physical symptoms including seizures, headaches, nausea, vomiting, pain and fatigue
- recommend the patient not to drive until they have had a neurosurgical review
- encouragement and support to increase levels of exercise (Cormie et al. 2018; Hayes et al. 2019).
For more information refer to the National Institute for Health and Care Excellence 2015 guidelines, Suspected cancer: recognition and referral.
For additional information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.
The general practitioner is responsible for:
- providing patients with information that clearly describes to whom they are being referred, the reason for referral and the expected timeframes for appointments
- requesting that patients notify them if the specialist has not been in contact within the expected timeframe
- considering referral options for patients living rurally or remotely
- supporting the patient while waiting for the specialist appointment (Cancer Council nurses are available to act as a point of information and reassurance during the anxious period of awaiting further diagnostic information; patients can contact 13 11 20 nationally to speak to a cancer nurse).
Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.
