Communication with patients should always be tailored to their age and developmental stage. For adolescents, and some children, it is important to involve them in the discussion rather than just speaking to their parent/carer. Similarly, the participation of young adults’ parent or support person should also be encouraged (Osborn et al. 2019).

In discussion with the patient and their families and carers, the lead clinician should undertake the following:

• establish if the patient has a regular or preferred general practitioner and if the patient does not have one, then encourage them to find one
• provide written information appropriate to the health literacy of the patient about the diagnosis and treatment to the patient and carer and refer the patient to the Guide to best cancer care (consumer optimal care pathway) for CAYA acute leukaemia, as well as to relevant websites and support groups as appropriate
• provide a treatment care plan including contact details for the treating team and information on when to call the hospital
• discuss a timeframe for diagnosis and treatment with the patient and carer
• discuss the benefits of multidisciplinary care and gain the patient’s or carer’s consent before presenting their case at an MDM
• provide brief advice and refer to Quitline (13 7848) for behavioural intervention if the patient currently smokes (or has recently quit), and prescribe smoking cessation pharmacotherapy, if clinically appropriate
• recommend an ‘integrated approach’ throughout treatment regarding nutrition, exercise and minimal or no alcohol consumption among other considerations
• communicate the benefits of continued engagement with primary care during treatment for managing comorbid disease, health promotion, care coordination and holistic care and supporting the family
• where appropriate, review fertility needs with the patient and refer for specialist fertility management (including fertility preservation, contraception, management during pregnancy and of future pregnancies)
• be open to and encourage discussion about the diagnosis, prognosis (if the patient or carer wishes to know) and survivorship and palliative care while clarifying the patient or carer’s preferences and needs, personal and cultural beliefs and expectations, and their ability to comprehend the communication
• encourage young adult patients to participate in advance care planning including considering appointing one or more substitute decision-makers, or a legal guardian, and completing an advance care directive to clearly document their treatment preferences (each state and territory has different terminology and legislation surrounding advance care directives and substitute decision-makers)
• discuss clinical trials (if available), explaining how this may differ from standard therapy and providing adequate information and time to enable an informed decision about participation (sites without open clinical trials may consider referring the patient to a site that does)
• refer 15–25-year-old patients to the jurisdiction’s Youth Cancer Service for psychosocial support
• offer referral to community support organisations such as Canteen, Camp Quality, Leukaemia Foundation, Redkite and other state-based NGOs; these frequently help support parents and siblings too.

Additionally, patients, family and carers should be provided with both verbal and written information on the following topics:

• management of fever and neutropenia
• side effects of treatment
• central line care
• caring for the child at home
• orientation to the hospital and overview of the healthcare team (key members)
• blood counts
• follow-up

Information specifically targeted to children with acute leukaemia immediately following diagnosis includes neutropenia precautions, medication adherence, chemotherapy side effects, bleeding precautions, managing procedures, nutrition and anaemia.

Verbal education to families and patients, where appropriate, should be paced throughout the initial admission and time allowed to process the diagnosis. Education should not be left to the moment of discharge, and families and patients, where appropriate, should be aware that education is ongoing and accessible throughout treatment.

Written and/or audio-visual educational information should be provided as part of the discharge plan following diagnosis and should also include information targeted to CAYA.

More information

For more information see the Victorian paediatric oncology care pathways: Providing optimal care for children and adolescents – acute leukaemia, central nervous system tumours and solid tumours (May 2019)