Although risk factors have been identified, the cause of CAYA acute leukaemia remains unknown. There is currently no evidence that lifestyle plays a role in CAYA acute leukaemia. It is important to ensure the patient and their family are aware of this to avoid feeling responsible for the illness.

The risk factors for developing CAYA acute leukaemia include the following.

Genetic predisposition

Some genetic disorders may increase the likelihood of developing CAYA acute leukaemia. These include, but are not limited to, Down syndrome, neurofibromatosis type-1, ataxia telangiectasia, inherited bone marrow failure syndromes and, rarely, inherited cancer predisposition syndromes (D’Orazio et al. 2010; Eden et al. 2010). Most cases of CAYA acute leukaemia do not have a genetic predisposition identified.

Siblings

Although the risk is still extremely low, siblings of CAYA acute leukaemia patients have a slightly increased risk of developing leukaemia compared with the general population.

Environmental factors

There is no evidence to suggest environmental factors contribute to CAYA acute leukaemia. CAYA patients who have been treated with certain chemotherapy agents for another cancer may be at a marginally increased risk of developing a secondary leukaemia, particularly treatment-related AML.

The clinical manifestations of acute leukaemia depend on the level of leukaemic infiltration into the marrow and extramedullary sites at the time of presentation, resulting in a wide spectrum of signs and symptoms. It is important to recognise parental and carer concern and the need to escalate investigations, particularly after repeated visits to healthcare professionals.

The following signs and symptoms may warrant consideration of a full blood count and peripheral blood film examination:

• persistent unexplained fever
• diffuse bone pain with no obvious trauma and/or refusal to walk in children
• generalised lymphadenopathy
• hepatosplenomegaly
• pallor
• unexplained bruising, unexplained bleeding or petechiae
• extreme fatigue
• recurrent

Children can sometimes have only mild symptoms, so the medical practitioner should be alert to the diagnosis, particularly when there is a constellation of the symptoms/signs as described above.

Rarely, leukaemia can manifest itself without an abnormal full blood count. Signs and symptoms include testicular swelling in males (testicular involvement with CAYA acute leukaemia) or isolated neurological symptoms such as cranial nerve palsies/headaches (central nervous system [CNS] CAYA leukaemia).

Although rare, general practitioners should be mindful of CAYA who present with the symptoms described above. It is important that there is a thorough clinical examination because the finding of significant lymphadenopathy or hepatosplenomegaly with petechiae/significant pallor and bruising will be an alert to the potential diagnosis.

A full blood count and blood film should be performed immediately.

If the patient is unwell with fever, bleeding, sepsis, respiratory distress (particularly orthopnoea and dyspnoea) or signs of hyperviscosity (respiratory distress or neurological signs) they should be referred immediately to a specialist centre, without waiting for laboratory blood results.

If CAYA acute leukaemia is suspected by pathology laboratories (e.g. high white cell count, pancytopenia or presence of blasts on the blood film), the pathology laboratory should contact the general practitioner by telephone immediately.

If the CAYA acute leukaemia diagnosis is suspected but not confirmed or the results are inconsistent or indeterminate, the general practitioner must immediately refer the patient via telephone to an appropriate specialist (paediatric or adult haematologist/oncologist) to make the diagnosis.

CAYA with a confirmed or a suspected laboratory diagnosis of acute leukaemia should be referred on the same day to a specialist service and have an urgent assessment within 24 hours, unless advised otherwise by a specialist.

The ideal referral should have the following minimum documentation, but collating this information should never delay the telephone referral:

• the patient and their family’s demographics including language barriers and need for an interpreter, relevant medical history, medications and allergies
• results of clinical investigations (including imaging and pathology reports)
• recognised significant psychosocial issues or other barriers to accessing care
• a written summary of what the patient, carer and family understand to be the reason for referral to local or more specialised service.

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 – Checking for cancer and Cancer from the Cancer Australia website.

The diagnostic evaluation is a critical time for these patients. It should provide a complete diagnosis according to the most recent classification system (Swerdlow et al. 2017), assess the presence of and manage any comorbidities, plus identify any predisposition syndrome.

This is essential to ensure accurate diagnosis, accurately classify the subtype of leukaemia, inform prognosis and ensure treatment decisions are evidence-based.

To achieve this the treatment team should perform a series of investigations, outlined below. Pre-treatment laboratory examinations include:

• full blood count and blood film review (note: morphological assessment of the blood film to identify acute promyelocytic leukaemia [APL] should be conducted immediately and the result conveyed to the treating physician)
• urea and creatinine, electrolytes including calcium and phosphate, liver function tests
• uric acid and lactate dehydrogenase
• blood group, antibody screen and red blood cell phenotype
• coagulation studies
• consideration of pharmacogenomic testing (e.g. TPMT and G6PD)
• haemoglobin electrophoresis
• immunoglobulins and T- and B-cell subsets
• for relevant or appropriate groups, pregnancy tests (urine or blood BHCG).

Pre-treatment medical imaging includes a chest x-ray to exclude a mediastinal mass.

Diagnostic laboratory investigations include work-up tests performed on bone marrow and/or trephine biopsy and, at times, also on peripheral blood morphology:

• immunophenotyping, karyotyping and FISH analysis
• molecular genetic analysis
• minimal residual disease (MRD) sample (either PCR-MRD or FLOW or by NGS). Other tests may include:
• DNA microarray (or chromosomal microarray)
• biobanking
• other investigations dictated by clinical trial

Lumbar puncture (LP) is performed to establish if there is any CNS disease. Most paediatric acute leukaemia protocols and adolescent and young adult (AYA) ALL protocols currently recommend that a diagnostic LP should occur before starting systemic chemotherapy. Some patients cannot have an LP before therapy such as those with coagulopathies. Therapy should be performed

with adequate platelet cover and performed by an experienced clinician to reduce the risk of a traumatic tap contaminating the CSF with blasts. To further minimise this complication, intrathecal chemotherapy should be given at the same time as the diagnostic LP.

In children and adolescents, diagnostic tests should be organised to reduce the number of procedures requiring general anaesthesia. For example, use peripheral blood flow cytometry to confirm the immunophenotype to allow central line placement, diagnostic LP and bone marrow (including collection for clinical trial enrolment), all under the same general anaesthetic.

Infection screening

It is important that infection screening is undertaken at diagnosis and before blood product support and definitive treatment. The purpose of this screening is to establish a baseline before administering blood products and to investigate serostatus to herpes family viruses, which may reactivate in immunosuppressed patients.

This screening should include routine serology – HBV, HCV, HIV, HTLV, HSV, VZV, EBV, CMV, syphilis and toxoplasma. For patients born or who have travelled overseas, particularly to tropical regions

or tuberculosis-endemic countries, consultation with infectious diseases should be sought. Other investigations are as clinically indicated and on discussion with the infectious diseases service (e.g. malaria screen, melioidosis serology in patients from Far North Queensland and the Top End of the Northern Territory).

Biobanking

Consent for biobanking of diagnostic material should be sought. In many upfront clinical trials in leukaemia, biobanking is a prerequisite to enrolment.

Measurable/minimal residual disease

An MRD level is a strong and independent predictor of relapse in CAYA acute leukaemia and widely used for risk stratification (Cave et al. 1998; Van Dongen et al. 1998). This requires a diagnostic marrow or peripheral blood specimen to enable identification of leukaemia-specific marker or leukaemia associated immunophenotype.

Clinical trial investigations

Further laboratory tests may be required for enrolment into clinical trials.

Staging is not clinically relevant in CAYA acute leukaemias other than for the presence of CNS disease and, in boys, testicular disease. However, appropriate prognostic assessment and risk stratification is a critical element in treatment planning and should be clearly documented in the patient’s medical record. This should be evidence-based to ensure patients at the highest risk of relapse receive appropriately intensified therapy while those with more favourable prognosis (the lowest risk of relapse) receive therapy of reduced intensity to reduce complications.

The most important current factors for prognostic assessment and risk stratification are cytogenetics and response to treatment using MRD. Newer molecular markers with prognostic and potentially therapeutic relevance in acute leukaemia will become clinically routine in the near future (Pui et al. 2018; Tasian & Hunger 2017).

Patient performance status is a central factor in cancer care and should be clearly documented in the patient’s medical record.

Performance status should be measured and recorded using an established scale such as the Karnofsky/Lansky scale or the Eastern Cooperative Oncology Group (ECOG) scale.

New diagnostic techniques in the biology of CAYA acute leukaemia continue to develop rapidly. The multidisciplinary team needs to be aware of these changes and advances and ensure they are translated to clinical management. CAYA acute leukaemia patients being enrolled in clinical trials

is important and associated with superior outcome. The team must know which suitable clinical trials are available for CAYA acute leukaemia. If there is no open clinical trial then every specialist CAYA acute leukaemia service should have a predefined, peer-reviewed treatment model that the multidisciplinary team has endorsed.

Participation in clinical trials, patient registries and tissue banking, where available, is encouraged for patients with CAYA acute leukaemia. The most important factor contributing to the improvement in survival in childhood leukaemia over the past 50 years has been the widespread participation in well- conducted phase 3 clinical trials (Pui et al. 2015). Clinical trial protocols are rigorously peer reviewed and are a means to ensure CAYA are receiving the best available treatment. These are expected to continue to be important in increasing survival rates for future generations. Enrolment in a clinical trial should be considered the standard of care for CAYA acute leukaemia, whenever possible.

For more information visit:

• Cancer Australia 
• Australian New Zealand Clinical Trials Registry 
• Australasian Leukaemia and Lymphoma Group 
• Australian & New Zealand Childrens Haematology/Oncology Group 
• ClinTrial Refer <www.clintrial.org.au>
• Clinical Trialsfor an international view.

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)

The intent at diagnosis for all CAYA with acute leukaemia is cure. Patients who develop refractory or relapsed disease are discussed in Step 6: Managing refractory, relapsed, residual or progressive disease.

The treatment intent should be established in a multidisciplinary setting, documented in the patient’s medical record and conveyed to the patient and carer as appropriate.

The lead clinician should discuss the advantages and disadvantages of each treatment and associated potential side effects with the patient and their carer or family before treatment consent is obtained and begins so the patient can make an informed decision. Supportive care services including community support organisations should also be considered during this decision- making process. Patients and carers should be asked about their use of (current or intended) complementary therapies (see Appendix D).

Timeframes for starting treatment should be informed by evidence-based guidelines where they exist. The treatment team should recognise that shorter timeframes for appropriate consultations and treatment can promote a better experience for patients.

Where appropriate, initiate advance care planning discussions with patients before treatment begins (this could include appointing a substitute decision-maker and completing an advance care directive). Formally involving a palliative care team/service may benefit any patient, so it is important to know and respect each person’s preference (Australian Government Department of Health 2021a).

Treatment options – newly diagnosed acute lymphoblastic leukaemia (ALL)

Advances in treating CAYA ALL have been achieved through successive well-designed international clinical trials (Pui et al. 2015). It is considered standard of care to enrol CAYA ALL patients into an open clinical trial for newly diagnosed ALL.

Most treatments for CAYA acute leukaemia patients start as inpatient; however, standard- risk leukaemia treatment can be delivered in an outpatient setting. Currently, treatment lasts approximately two years and the treatment plan depends on risk stratification. Treatment includes CNS-directed therapy.

All AYA with ALL should be treated according to a paediatric (or paediatric-inspired) protocol because there is consistent and compelling evidence that these confer superior survival outcomes (Siegel et al. 2018; Stock et al. 2019).

MRD is an important test for measuring response to treatment in CAYA ALL. The general principles for MRD monitoring for CAYA ALL are:

• diagnostic (baseline MRD panel) specimen
• end of induction therapy
• end of consolidation for those who are positive at end of induction
• end of induction therapy in relapsed disease
• prior to a transplant for patients preceding HSCT
• additional timepoints may be required in patients receiving novel/cellular immunotherapies, including CAR T-cell therapy.

These time points will vary according to the clinical protocol and the requirements of clinical trials.

Treatment options – acute myeloid leukaemia (AML)

Systemic chemotherapy-based treatment is the backbone of AML therapy and is divided into two phases: induction therapy to achieve remission and consolidation therapy once a remission has been achieved to maintain ongoing remission or as a bridge to HSCT in some patients. Currently, total duration is four to six months, depending on risk stratification. Treatment is risk-stratified based on cytogenetics and response using MRD. CNS-directed therapy is given during treatment.

MRD is an important test for measuring response to treatment in CAYA AML. The general principles for MRD monitoring for CAYA AML are:

• diagnostic (baseline MRD panel) specimen
• end of the first course of induction
• consideration at end of subsequent course, if positive at end of

These time points will vary according to the clinical protocol and the requirements of clinical trials.

Treatment options – infant leukaemia

Infants diagnosed with ALL are at high risk of relapse and have significantly inferior outcomes that school-aged children (Kotecha et al. 2014; Pieters et al. 2009; 2019). Current event-free survival remains at 50 per cent, despite best-practice international collaborative trials. Treatment is intensive and predominantly inpatient-based. New therapies are examining the addition of specific targeted therapies (Clesham et al. 2020) because current treatment regimens have reached dose-limiting toxicities.

MRD is an important test for measuring response to treatment in infant ALL. The general principles for MRD monitoring for infant ALL are as per section 4.2.1. MRD at the end of induction may identify some infants that would benefit from AML-like consolidation (Stutterheim et al. 2021).

It is important that infants with a leukaemia diagnosis are enrolled in clinical trials, wherever possible.

Treatment options – acute promyelocytic leukaemia

Although CAYA APL is rare, many patients at diagnosis have significant coagulopathy. The presentation of APL is a medical emergency because of the high risk of death as a result of the associated coagulopathy. If APL is suspected, treatment should start without delay. These patients are managed at diagnosis as inpatients in specialist centres with ready access to intensive care and blood products to manage the life-threatening coagulopathy. These patients do not get a diagnostic LP because of the coagulopathy. Patients undergo molecular monitoring to guide treatment (e.g. quantitative molecular

MRD for PML-RARA gene fusion). Consolidation therapy after induction can usually be outpatient-based.

Timeframes for starting treatment Urgent pathway

Treatment should begin on the day of presentation immediately following diagnostic interventions. Urgent patients include, but are not limited to, those who present with hyperleucocytosis, tumour lysis syndrome, mediastinal mass and coagulopathies.

Standard pathway

Treatment for should start by the next business day following diagnosis. In clinically stable patients, clinical trial requirements and the level of institutional resources available on the day to provide optimal care should guide timings.

‘After-hours’ admission of newly diagnosed patients

The timing of diagnostic and therapeutic interventions should be flexible and reflect clinical need, particularly for patients who present with oncological emergencies.

Chemotherapy is the key component for treating CAYA acute leukaemia. Due to the complexity and toxicity of administering cytotoxic agents to patients, adherence to medication safety standards (e.g. mini-bag vincristine infusions) and the demands for supportive care, intravenous chemotherapy should be delivered via a central venous access device.

Urgent pathway

Central venous access should be established on the day of presentation, if possible.

Standard pathway

Insertion of a central venous access device should be undertaken before initial treatment, if possible. However, this may vary and institutional guidelines should be followed.

Training and experience required of the appropriate specialists

Paediatric or adult haematologist/oncologists treating CAYA acute leukaemia must have training and experience of this standard:

• Fellow of the Royal Australian College of Physicians (or equivalent)
• adequate training and experience that enables institutional credentialing and agreed scope of practice within this area (ACSQHC 2015).

Cancer nurses should have accredited training and demonstrate competency in these areas:

• anti-cancer treatment administration
• specialised nursing care for patients undergoing cancer treatments, including side effects and symptom management
• the handling and disposal of cytotoxic waste (ACSQHC 2020).

Systemic therapy should be prepared by a pharmacist whose background includes this experience:

• adequate training in systemic therapy medication, including dosing calculations according to protocols, formulations and/or preparation.

In a setting where no medical oncologist is locally available (e.g. regional or remote areas), some components of less complex therapies may be delivered by a general practitioner or nurse with training and experience that enables credentialing and agreed scope of practice within this area. This should be in accordance with a detailed treatment plan or agreed protocol, and with communication as agreed with the medical oncologist or as clinically required.

The training and experience of the appropriate specialist should be documented.

Health service characteristics

Treatment for CAYA acute leukaemia is administered by a specialist cancer service.

Consideration for supportive care and some aspects of treatment such as administering chemotherapy in shared care centres outside the specialist cancer service and referral to community support organisations should be made after consultation with the patient’s multidisciplinary team.

Episodes of chemotherapy in regional shared care centres should be conducted via telehealth between the local health service and the child’s oncologist or haematologist.

Palliative care is a multidisciplinary approach to symptom management and psychosocial support and helps identify care goals for patients with serious illness and their families. Note, a significant number of patients with CAYA acute leukaemia are cured.

Paediatric palliative care services can also support and provide care coordination with other care providers such as schools, NDIS providers, equipment services and community services to enhance care of the patient and their family. Sibling support and grandparent support can also be provided. Bereavement care, including anticipatory grief, is a core element of paediatric palliative care.

Early referral to palliative care can improve the quality of life for people with cancer (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). This is particularly true for cancer with poor prognosis.

The lead clinician should ensure patients receive timely and appropriate referral to paediatric palliative care services. Referral should be based on need rather than prognosis. When given an evidence- based process to safely address these confronting issues, young people and their families are highly engaged. Addressing the value of palliative care and advance care planning with young people has been shown to reduce their anxiety, does not affect depression, improves symptom management and quality of life for patients and their carers (Wiener et al. 2008; 2012).

The ‘Dying to Talk’ resource may help health professionals, where appropriate, initiating discussions with patients, family or carer about future care needs (see ‘More information’). Ensure that carers and families receive information, support and guidance about their role in palliative care (Palliative Care Australia 2018).

Where appropriate, patients, their family or carer should be encouraged to initiate advance care planning. Advance care planning discussions can be triggered at the time of diagnosis to ensure care is informed by respect and knowledge of the patient or caregiver’s preferences.

Therapies such as HSCT, treatment for high-risk AML and targeted therapies within the context of clinical trials can result in high levels of physical, psychological and existential distress, despite having curative intent. CAYA with an uncertain prognosis and high symptom burden should be able to access palliative care support alongside curative-intent therapies.

Discussion should be held within a CAYA acute leukaemia MDM to offer the family referral to palliative care services where there is a likely need to escalate care to manage symptoms and distress in

high-risk curative regimens such as HSCT, as well as support when cure is no longer the intent of the multidisciplinary team.

Refer to Step 6 for a more detailed description of managing patients with refractory, relapsed, residual or progressive or refractory disease.

More information

These online resources are useful:

• • Advance Care Planning Australia 
  • CareSearch Children & Adolescents 
  • the Palliative Care resource kit 
  • Palliative Care Australia (for patients and carers) 
  • Quality of Care Collaborative Australia <https://www.quocca.com.au/>
  • Canteen 
  • Australian best practice guidelines on end-of-life communication with CAYA (Sansom- Daly et al. 2020)
  • Agency for Clinical Innovation Transition Care Network

The team should support the patient to participate in research or clinical trials where available and appropriate. Many emerging treatments are only available on clinical trials that may require referral to certain trial centres.

For more information visit:

• • Cancer Australia
  • Australian New Zealand Clinical Trials Registry
  • Australasian Leukaemia and Lymphoma Group 
  • Australian & New Zealand Childrens Haematology/Oncology Group 
  • ClinTrial Refer
  • Clinical Trials for an international view.

The transition from active treatment to post-treatment care is critical to long-term health. In some cases, people will need ongoing, hospital-based care, and in other cases a shared follow-up care arrangement with their general practitioner may be appropriate.

Shared follow-up care involves the joint participation of specialists and general practitioners in the planned delivery of follow-up and survivorship care. A shared care plan is developed that outlines the responsibilities of members of the care team, the follow-up schedule, triggers for review, plans for rapid access into each setting and agreement about the format, frequency and triggers for communication.

After completing initial treatment, a designated member of the multidisciplinary team (most commonly nursing or medical staff involved in the patient’s care) should provide the patient with a needs assessment and treatment summary and develop a survivorship care plan in conjunction

with the patient. This should include a comprehensive list of issues identified by all members of the multidisciplinary team involved in the patient’s care and by the patient. These documents are key resources for the patient and their healthcare providers and can be used to improve communication and care coordination.

The treatment summary should cover, but is not limited to:

• the diagnostic tests performed and results
• diagnosis including stage, prognostic or severity score
• cancer characteristics
• treatment received (types and dates)
• current toxicities (severity, management and expected outcomes)
• interventions and treatment plans from other health providers
• potential long-term and late effects of treatment
• supportive care services provided, including referral to survivorship programs
• follow-up schedule and planned surveillance
• contact information for key healthcare

Survivorship

A referral to a survivorship program should occur at the end of treatment with the view of transitioning to the survivorship program at the end of the surveillance period. Where appropriate this should include referral to community support organisations such as, Camp Quality, Cancer Council, Canteen, Leukaemia Foundation and Redkite.

All patients should be given an updated treatment summary and a roadmap for late-effects surveillance on entering the survivorship program.

Patients and their families should be provided with educational material about survivorship, including adopting a healthy lifestyle. Large cohort studies show there is a prevalence for significant adverse long-term outcomes in ALL and recommend regular, primary care consultations.

Transition from paediatric to adult care

Most survivors of CAYA acute leukaemia will transition to a general practitioner with a treatment summary and roadmap outlining investigations and surveillance required. For patients who have undergone a transplant, transition to an adult transplantation service may be appropriate.

Responsibility for follow-up care should be agreed between the lead clinician, the general practitioner, relevant members of the multidisciplinary team and the patient. This is based on guideline recommendations for post-treatment care, as well as the patient’s current and anticipated physical and emotional needs and preferences.

Evidence comparing shared follow-up care and specialised care indicates equivalence in outcomes including recurrence rate, cancer survival and quality of life (Cancer Research in Primary Care 2016).

Ongoing communication between healthcare providers involved in care and a clear understanding of roles and responsibilities is key to effective survivorship care.

In particular circumstances, other models of post-treatment care can be safely and effectively provided such as nurse-led models of care (Monterosso et al. 2019). Other models of post-treatment care can be provided in these locations or by these health professionals:

• in a shared care setting
• in a general practice setting
• by non-medical staff
• by allied health or nurses
• in a non-face-to-face setting (e.g. by telehealth).

A designated member of the team should document the agreed survivorship care plan. The survivorship care plan should support wellness and have a strong emphasis on healthy lifestyle changes such as a balanced diet, a non-sedentary lifestyle, weight management and a mix of aerobic and resistance exercise (COSA 2018; Hayes et al. 2019).

This survivorship care plan should also cover, but is not limited to:

• what medical follow-up is required (surveillance for recurrence or secondary and metachronous cancers, screening and assessment for medical and psychosocial effects)
• model of post-treatment care, the health professional providing care and where it will be delivered
• care plans from other health providers to manage the consequences of cancer and cancer treatment
• wellbeing, primary and secondary prevention health recommendations that align with chronic disease management principles
• rehabilitation recommendations
• available support services including community support services
• a process for rapid re-entry to specialist medical services for suspected

Survivors generally need regular follow-up, often for five or more years after cancer treatment finishes. The survivorship care plan therefore may need to be updated to reflect changes in the patient’s clinical and psychosocial status and needs.

Processes for rapid re-entry to hospital care should be documented and communicated to the patient and relevant stakeholders.

Care in the post-treatment phase is driven by predicted risks (e.g. the risk of recurrence, developing late effects of treatment and psychological issues) as well as individual clinical and supportive

care needs. It is important that post-treatment care is based on evidence and is consistent with guidelines. Not all people will require ongoing tests or clinical review and may be discharged to general practice follow-up.

The lead clinician should discuss (and general practitioner reinforce) options for follow-up at the start and end of treatment. It is critical for optimal aftercare that the designated member of the treatment team educates the patient about the symptoms of recurrence.

General practitioners (including nurses) can:

• connect patients to local community services and programs
• manage long-term and late effects
• manage comorbidities
• provide wellbeing information and advice to promote self-management
• screen for cancer and non-cancerous

More information

Templates and other resources to help with developing treatment summaries and survivorship care plans are available from these organisations:

• Australian Cancer Survivorship Centre
• Cancer Australia – Principles of Cancer Survivorship
• Cancer Council Australia and states and territories
• Clinical Oncology Society of Australia – Model of Survivorship Care
• eviQ – Cancer survivorship: introductory course
• MyCarePlan.org.au
• South Australian Cancer Service – Statewide Survivorship Framework resources
• American Society of Clinical Oncology

Support cancer survivors to participate in research or clinical trials where they are available and appropriate. These might include studies to understand survivors’ issues, to better manage treatment side effects, or to improve models of care and quality of life.

For additional information visit:

• Cancer Australia 
• Australian New Zealand Clinical Trials Registry
• Australasian Leukaemia and Lymphoma Group 
• Australian & New Zealand Childrens Haematology/Oncology Group
• ClinTrial Refer 
•  Clinical Trials for an international view.

Some patients may present with symptoms of relapsed disease after a previous cancer diagnosis. The relapse may be discovered by the patient or by surveillance in the post-treatment period.

Access to the best available therapies, including clinical trials, as well as treatment overseen by a multidisciplinary team, are crucial to achieving the best outcomes for anyone with relapsed or refractory disease.

There should be an immediate referral to a leukaemia multidisciplinary team specialist cancer service for all patients with suspected or confirmed relapse.

All CAYA with relapsed or refractory acute leukaemia should be managed by a specialist cancer service.

From the time of diagnosis, the team should offer patients appropriate psychosocial care, supportive care, advance care planning and symptom-related interventions as part of their routine care. The approach should be personalised to meet the patient’s individual needs, values and preferences. The full complement of supportive care measures as described throughout the optimal care pathway and in Appendices A, B and C should be offered to assist patients and their families and carers to cope. These measures should be updated as the patient’s circumstances change.

Survivorship issues should be considered as part of routine care. Health professionals should therefore be ready to change and adapt treatment strategies according to disease status, prior treatment tolerance/toxicities and the patient’s quality of life, in addition to the patient’s priorities and life plans.

If there is an indication that a patient’s cancer has returned, care should be provided under the guidance of a treating specialist.

There should be an immediate referral to a leukaemia multidisciplinary team within a CAYA cancer service for all with suspected or confirmed relapse. As with frontline therapy, routine involvement of allied health (e.g. social work, psychology) within the team is required. The team may include new members such as palliative care specialists.

Treatment will depend on the timing of relapse, location of relapse (isolated bone marrow relapse, isolated extramedullary relapse, combined relapse), immunophenotype in ALL (B-cell vs T-cell), previous management, response to salvage therapy (including MRD response in ALL), number of previous relapses and the patient’s preferences.

CAYA with relapsed ALL are often eligible for enrolment in clinical trials for relapsed disease. These typically involve systemic chemotherapy, newer targeted agents and/or immunotherapy, together with HSCT for selected patients.

In relapsed AML, achieving rapid remission via systemic chemotherapy, targeted therapies and/or immunotherapy followed by HSCT is currently the most effective curative strategy.

Immunotherapy or immune effector cell therapy is used in certain relapsed acute leukaemia patients. Current examples of immunotherapy used in acute leukaemia include BiTEs (e.g. blinatumomab), antibody drug conjugates (e.g. gemtuzumab, inotuzumab) and CAR T-cells (e.g. tisagenlecleucel).

A number of additional immunotherapies are currently under investigation in CAYA acute leukaemia.

Access to new therapies that have not yet been approved by the Pharmaceutical Benefits Scheme may sometimes be challenging. This highlights the importance of enrolling CAYA with relapsed/ refractory disease onto clinical trials wherever possible.

The potential goals of treatment should be discussed, respecting the patient’s cultural values. Wherever possible, written information should be provided.

Advance care planning is important for all patients with a cancer diagnosis but especially those with advanced disease. Where appropriate, patients, their family or carer should be encouraged to think and talk about their healthcare values and preferences and consider developing an advance care directive to convey their preferences for future health care (Australian Government Department of Health 2021a). The lead oncologist, haematologist, palliative care team or general practitioner are best placed to assist with a CAYA-centred approach and assist in developing an advance care directive.

More information

Refer to section 4.3 ‘More information’ for links to resources.

Refer patients and carers to Advance Care Planning Australia  or to the Advance Care Planning National Phone Advisory Service on 1300 208 582.

Refer patients, their family or carer to the Thinking ahead framework  or call (03) 9345 5522.

Early referral to palliative care can improve the quality of life for people with cancer and in some cases may be associated with survival benefits (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). The treatment team should emphasise the value of palliative care in improving symptom management and quality of life to patients and their carers. Refer to section 4.3 for more detailed information.

CAYA with an uncertain prognosis and a high symptom burden should be able to access palliative care support alongside curative-intent therapies.

Cases of relapse should trigger a referral to palliative care services.

The lead clinician should ensure timely and appropriate referral to paediatric palliative care services. Referral to palliative care services should be based on the patient’s need and potential for benefit, not prognosis.

More information

Refer to the end of section 4.3 ‘Palliative care’ for links to resources.

The treatment team should support the patient to participate in research and clinical trials where available and appropriate.

For additional information visit:

• Cancer Australia 
• Australian New Zealand Clinical Trials Registry 
• Australasian Leukaemia and Lymphoma Group 
• Australian & New Zealand Childrens Haematology/Oncology Group
• ClinTrial Refer
• ClinicalTrials for an international view.

If the treatment team does not include a palliative care member, the lead clinician should consider referring the patient to palliative care services. This may include inpatient palliative unit access

(as required) hospice, and support for end-of-life care at home, and is often done as a collaboration between haematology, paediatric oncology and the palliative care team.

The multidisciplinary team may consider seeking additional expertise from these professionals:

• clinical psychologist
• clinical nurse specialist or practitioner
• social worker
• palliative medicine specialist
• pain specialist
• pastoral or spiritual carer
• bereavement counsellor
• music therapist
• art therapist
• cultural expert
• Canteen for children of parents with cancer

The team might also recommend that patients access:

• home- and community-based care
• specialist community palliative care workers
• community

If the patient does not already have an advance care directive in place, a designated member of the treatment team should encourage them to develop one in collaboration with their family or carer (Australian Government Department of Health 2021a).

It is essential for the treatment team to consider the appropriate place of care, the patient’s preferred place of death and the support needed for the patient, their family and carers.

The treatment team should also ensure that carers and families receive the information, support and guidance about their role according to their needs and wishes (Palliative Care Australia 2018).

More information

The treatment team can refer patients and carers to these resources:

• • Palliative Care Australia and children’s hospice information 
  • Advance Care Planning Australia  or to Advance Care Planning Australia’s National Advisory Service on 1300 208

Clinical trials may help improve palliative care and in managing a patient’s symptoms of advanced cancer (Cancer Council Victoria 2019). The treatment team should support the patient to participate in research and clinical trials where available and appropriate.

For more information visit:

• Cancer Australia 
• Australian New Zealand Clinical Trials Registry
• Australasian Leukaemia and Lymphoma Group
• Australian & New Zealand Childrens Haematology/Oncology Group 
• ClinTrial Refer
• Clinical Trials for an international view.

Adolescence and young adulthood is a dynamic and distinct developmental period and in recent years has emerged as a distinct field in oncology (Cancer Australia 2008; Canteen 2017). This focus has helped address the lack of progress in survival and quality-of-life outcomes for this group (Ferrari et al. 2010).

The needs of adolescents and young adults with cancer

(This section has been reproduced with permission from the Australian youth cancer framework, Canteen 2017, pp. 4–5.)

Young people with cancer face an unexpected, life-changing and extraordinary challenge to accept, manage and overcome a critical illness during this transformative stage of life. In addition to facing

a potentially life-threatening illness at a time that is usually filled with life-affirming potential, young people with cancer face a range of challenges that have particularly significant impact at this stage of life (see diagram below).

In caring for young people with cancer, akin to the comorbidities that require specific care in the older cancer population, the treatment team needs to pay careful attention to promoting normal development (COSA 2014). This requires personalised assessments and management involving a multidisciplinary, disease-specific, developmentally targeted approach that adheres to the following principles:

• understanding the developmental stages of adolescence and supporting normal adolescent health and development alongside cancer management
• understanding and supporting the rights of young people
• communication skills and information delivery that are appropriate to the young person
• meeting the needs of all involved, including the young person, their carers and their family
• working with educational institutions and workplaces
• considering survivorship and palliative care

An oncology team caring for an adolescent or young adult with cancer should be able to demonstrate these specific areas of expertise:

• be able to ensure access to expert adolescent and young adult health providers who have knowledge specific to the biomedical and psychosocial needs of the population
• understand the biology and current management of the disease in the adolescent and young adult age group
• consider participating in research and clinical trials for each patient
• engage in proactive discussion and management of fertility preservation, late effects of treatment, ongoing need for contraception, and psychosocial and psychosexual needs
• provide treatment in an environment that is friendly to adolescents and young

If a young person is aged 15–25 years, contact with Youth Cancer Services is recommended for advice or referral regarding developmentally appropriate treatment and support.

The comprehensive model of care offered by Youth Cancer Services is consistent with national optimal care pathways developed by the Australian Government’s National Cancer Expert Reference Group. Specialist, age-appropriate medical, nursing and allied health treatment and support is offered to young cancer patients via a national network of hospitals.

At the time of publication, a population based optimal care pathway for adolescents and young adults with cancer was under development. This resource provides a tool to help guide system safety and responsiveness to the unique needs of adolescents and young adults diagnosed with cancer and improve outcomes and experience. It can be used in conjunction with the optimal care pathway for each cancer type.

For people from culturally diverse backgrounds in Australia, a cancer diagnosis can come with additional complexities, particularly when English proficiency is poor. In many languages there is not a direct translation of the word ‘cancer’, which can make communicating vital information difficult. Perceptions of cancer and related issues can differ greatly in people from culturally

diverse backgrounds and this can affect their understanding and decision making after a cancer diagnosis. In addition to different cultural beliefs, when English language is limited there is potential for miscommunication of important information and advice, which can lead to increased stress and anxiety for patients.

A professionally trained interpreter (not a family member or friend) should be made available when communicating with people with limited English proficiency. Navigation of the Australian healthcare system can pose problems for those with a non-Anglo culture, and members of the treatment teams should pay particular attention to supporting these patients.

The Australian Cancer Survivorship Centre has developed a glossary of more than 700 cancer terms in nine different languages. The multilingual glossary has been designed as a resource for professional translators, interpreters and bilingual health professionals working in the cancer

field. The glossary is a unique tool that enables language professionals with access to accurate, consistent and culturally appropriate terminology.

Visit the Peter Mac website to see the glossary.

Disability, which can be physical, intellectual or psychological, may have existed before the cancer diagnosis or may be new in onset (occurring due to the cancer treatment or incidentally). Adjusting to life with a disability adds another challenge to cancer care and survivorship.

Several barriers prevent people with disabilities from accessing timely and effective health care (AIHW 2017):

• physical limitations
• competing health needs
• the trauma of undergoing invasive procedures
• potential barriers associated with obtaining informed consent
• failure to provide assistance with communication
• lack of information
• discriminatory attitudes among healthcare

In caring for people with disabilities and a cancer diagnosis, the Australian Institute of Health and Welfare disability flag should be used at the point of admittance to correctly identify and meet the additional requirements of a person with disability. Facilities should actively consider access requirements, and health practitioners should make reasonable adjustments where required.

Patients aged between seven and 65 years who have a permanent or significant disability may be eligible for support or funding through the NDIS (National Disability Insurance Agency 2018). More information can be found on the NDIS website 

Patients aged 65 years or older (50 years or older for Aboriginal or Torres Strait Islander people) may be eligible for subsidised support and services through aged care services. An application to determine eligibility can be completed online over the phone. More information can be found at the My Aged Care website 

More information

‘Talking End of Life’ is a resource that shows how to teach people with intellectual disability about end of life. It is designed for disability support workers but is also helpful for others including families, health professionals and educators.

To view the resource, visit the Talking End of Life website 

Adolescence and young adulthood is a dynamic and distinct developmental period and in recent years has emerged as a distinct field in oncology (Cancer Australia 2008; Canteen 2017). This focus has helped address the lack of progress in survival and quality-of-life outcomes for this group (Ferrari et al. 2010).

The needs of adolescents and young adults with cancer

(This section has been reproduced with permission from the Australian youth cancer framework,

Canteen 2017, pp. 4–5.)

Young people with cancer face an unexpected, life-changing and extraordinary challenge to accept, manage and overcome a critical illness during this transformative stage of life. In addition to facing

a potentially life-threatening illness at a time that is usually filled with life-affirming potential, young people with cancer face a range of challenges that have particularly significant impact at this stage of life (see diagram below).

In caring for young people with cancer, akin to the comorbidities that require specific care in the older cancer population, the treatment team needs to pay careful attention to promoting normal development (COSA 2014). This requires personalised assessments and management involving a multidisciplinary, disease-specific, developmentally targeted approach that adheres to the following principles:

• understanding the developmental stages of adolescence and supporting normal adolescent health and development alongside cancer management
• understanding and supporting the rights of young people
• communication skills and information delivery that are appropriate to the young person
• meeting the needs of all involved, including the young person, their carers and their family
• working with educational institutions and workplaces
• considering survivorship and palliative care

An oncology team caring for an adolescent or young adult with cancer should be able to demonstrate these specific areas of expertise:

• be able to ensure access to expert adolescent and young adult health providers who have knowledge specific to the biomedical and psychosocial needs of the population
• understand the biology and current management of the disease in the adolescent and young adult age group
• consider participating in research and clinical trials for each patient
• engage in proactive discussion and management of fertility preservation, late effects of treatment, ongoing need for contraception, and psychosocial and psychosexual needs
• provide treatment in an environment that is friendly to adolescents and young

If a young person is aged 15–25 years, contact with Youth Cancer Services  is recommended for advice or referral regarding developmentally appropriate treatment and support.

The comprehensive model of care offered by Youth Cancer Services is consistent with national optimal care pathways developed by the Australian Government’s National Cancer Expert Reference Group. Specialist, age-appropriate medical, nursing and allied health treatment and support is offered to young cancer patients via a national network of hospitals.

At the time of publication, a population based optimal care pathway for adolescents and young adults with cancer was under development. This resource provides a tool to help guide system safety and responsiveness to the unique needs of adolescents and young adults diagnosed with cancer and improve outcomes and experience. It can be used in conjunction with the optimal care pathway for each cancer type.

In general, people from lower socioeconomic groups are at greater risk of poor health, have higher rates of illness, disability and death, and live shorter lives than those from higher socioeconomic groups (AIHW 2016). People experiencing socioeconomic disadvantage are less likely to participate in screening programs, more likely to be obese, less likely to exercise and much more likely to smoke, which are all risk factors for cancer.

In 2010–2014 age-standardised cancer incidence rates were higher in the lowest socioeconomic areas compared with the highest socioeconomic areas for all cancers combined (Cancer Australia 2019b).

Socioeconomic status and low health literacy are closely correlated. Therefore, effective communication with patients and carers is particularly important given the prevalence of low health literacy in Australia (estimated at 60 per cent of Australian adults) (ACSQHC 2014).

Consideration should be taken for cancer patients experiencing socioeconomic disadvantage to reduce their risk of being underserved for health care.

A diagnosis of cancer may present additional challenges to people who have pre-existing chronic mental health or psychiatric concerns, resulting in exacerbation of their mental health symptoms. This may include heightened anxiety, worsening depression or thoughts of self-harm.

As poor adjustment and coping can affect treatment decisions, people who are known to have a mental health diagnosis need psychosocial assessment in the oncology setting to formulate a plan for ongoing support throughout treatment.

Psychosocial support can assist with challenges in communicating with health professionals, enhance understanding of the treatment journey, ensure capacity for consent to treatment options and improve compliance with treatment requests. A referral for psychosocial support from a health professional to the psycho-oncology team can ensure these patients are provided with targeted interventions or referrals to community-based services that may mitigate problems associated with the impacts of social isolation that frequently accompany chronic mental ill-health.

Many patients with chronic mental health problems may be well known to external service providers. Psycho-oncology health professionals can form meaningful partnerships with existing service providers to optimise patient care throughout treatment and beyond.

Drug use disorders fall within the area of mental health conditions. People who are opiate dependent may have specific and individual requirements regarding pain management and their own preference for type of opiate prescribed or used.

People who identify as sexually or gender diverse may have unique needs following a cancer diagnosis. Sexually or gender diverse identities include (but are not limited to) people who identify as lesbian, gay, bisexual or transgender. There is no universally agreed upon initialism to describe this community, with other terms such as queer/questioning (Q), intersex (I), asexual (A) and pansexual

(P) often included, as well as a plus symbol (+) indicating inclusivity of other identities not explicitly mentioned. For the purposes of this document, this community is referred to as LGBTQI+.

Sexual orientation and gender identity are relevant across the entire spectrum of cancer care, from prevention to survivorship and end-of-life care. LGBTQI+ people are less likely to participate in cancer screening, and some segments of the LGBTQI+ community exhibit elevated rates of specific cancer risk factors – for example, higher rates of smoking and alcohol use. Regarding treatment, there may be unique factors relevant to LGBTQI+ people that may affect decision making. Additionally, the LGBTQI+ population experiences higher rates of anxiety, depression and

stressful life circumstances, and may be at risk of inferior psychosocial outcomes following a cancer diagnosis. LGBTQI+ people are also more likely to be estranged from their families of origin, and for older people, less likely to have adult children who may provide support and care.

Barriers to care for LGBTQI+ people include past negative interactions with healthcare systems, experiences or fear of discrimination and harassment in healthcare settings, assumptions of cisgender/heterosexual identity, lack of recognition or exclusion of same-sex partners from care, and a lack of relevant supportive care and information resources.

To provide safe and appropriate care for LGBTQI+ people with cancer, healthcare providers should:

• display environmental cues to show an inclusive and safe setting for LGBTQI+ patients
• avoid assumptions about the sexual orientation or gender identity of patients and their partners
• facilitate positive disclosure of sexual orientation or gender identity
• include same-sex/gender partners and families of choice in care
• be aware of relevant supportive care and information resources
• provide non-judgemental, patient-centred

Supportive care in cancer refers to the following five domains:

• the physical domain, which includes a wide range of physical symptoms that may be acute, relatively short lived or ongoing, requiring continuing interventions or rehabilitation
• the psychological domain, which includes a range of issues related to the patient’s mental health wellbeing and personal relationships
• the social domain, which includes a range of social and practical issues that will affect the patient, carer and family such as the need for emotional support, maintaining social networks and financial concerns
• the information domain, which includes access to information about cancer and its treatment, recovery and survivorship support services and the health system overall
• the spiritual domain, which focuses on the patient’s changing sense of self and challenges to their underlying beliefs and existential concerns (Palliative Care Victoria 2019).
• Fitch’s (2000) model of supportive care recognises the variety and level of intervention required at each critical point as well as the need to be specific to the individual patient (Figure A1). The model targets the type and level of intervention required to meet patients’ supportive care needs.

Clinicians need to be aware that these may vary according to the age and developmental stage of the child or young person. Children frequently manifest distress as changes in behaviour. While acting out or oppositional behaviour may be readily identifiable, behavioural change may be more subtle, such as withdrawn, irritable, psychosomatic or regressed behaviour. Specific issues of concern also vary according to age and level of understanding.

Consider a referral to a psychologist, psychiatrist, pastoral/spiritual care practitioner, social worker, specialist nurse or a relevant community-based program if the patient, family or carer has these issues:

• displaying emotional cues such as tearfulness, distress that requires specialist intervention, avoidance or withdrawal
• being preoccupied with or dwelling on thoughts about cancer and death
• displaying fears about the treatment process or the changed goals of their treatment
• displaying excessive fears about cancer progression or recurrence
• worrying about loss associated with their daily function, dependence on others and loss of dignity
• becoming isolated from family and friends and withdrawing from company and activities that they previously enjoyed
• feeling hopeless and helpless about the effect that cancer is having on their life and the disruption to their life plans
• struggling to communicate with family and loved ones about the implications of their cancer diagnosis and treatment
• experiencing changes in sexual intimacy, libido and function
• struggling with the diagnosis of relapsed or refractory disease
• having difficulties quitting smoking (refer to Quitline on 13 7848) or with other drug and alcohol use
• having difficulties transitioning to palliative

Additional considerations that may arise for the multidisciplinary team include:

• support for the carer – encourage referrals to psychosocial support from a social worker, psychologist or general practitioner
• referral to an exercise physiologist or physiotherapist as a therapeutic approach to prevent and manage psychological health
• referral to wellness-after-cancer programs to provide support, information and offer

Complementary therapies may be used together with conventional medical treatments to support and enhance quality of life and wellbeing. They do not aim to cure the patient’s cancer. Instead, they are used to help control symptoms such as pain and fatigue (Cancer Council Australia 2019).

The lead clinician or health professional involved in the patient’s care should discuss the patient’s use (or intended use) of complementary therapies not prescribed by the multidisciplinary team to assess safety and efficacy and to identify any potential toxicity or drug interactions.

The lead clinician should seek a comprehensive list of all complementary and alternative medicines being taken and explore the patient’s reason for using these therapies and the evidence base.

A transparent and honest discussion that is free from judgement should be encouraged.

While some complementary therapies are supported by strong evidence, others are not. For such therapies, the lead clinician should discuss their potential benefits and use them alongside conventional therapies (NHMRC 2014).

If the patient expresses an interest in using complementary therapies, the lead clinician should consider referring patients to health providers within the multidisciplinary team who have expertise in the field of complementary and alternative therapies (e.g. a clinical pharmacist, dietitian or psychologist) to assist them to reach an informed decision. Costs of such approaches should be part of the discussion with the patient and considered in the context of evidence of benefit.

The lead clinician should assure patients who use complementary therapies that they can still access a multidisciplinary team review and encourage full disclosure about therapies being used.

More information

• See Cancer Australia’s position statement on complementary and alternative therapies
• See the Clinical Oncological Society of Australia’s position statement Use of complementary and alternative medicine by cancer patients 

Advance Care Planning Australia

Advance Care Planning Australia provides national advance care planning resources for individuals, families, health professional and service providers. Resources include a national advisory service, information resources, a legal forms hub and education modules.

• Telephone: 1300 208 582
• Website

Australian Cancer Survivorship Centre

The Australian Cancer Survivorship Centre has developed information resources and events to help people move from initial treatment to post treatment and beyond, including those receiving maintenance treatments. While they do not provide clinical advice, they connect with a range of providers to enable improved care.

• Telephone: (03) 8559 6220
• Website

Australian Commission on Safety and Quality in Health Care

The Australian Commission on Safety and Quality in Health Care has developed a resource for patients and carers explaining the coordination of care that patients should receive from their health service during cancer treatment. The resource is called What to expect when receiving medication for cancer care.

Beyond Blue

Beyond Blue provides information about depression, anxiety and related disorders, as well as about available treatment and support services.

• Telephone: 1300 22 4636
• Website

Camp Quality

Camp Quality gives kids facing cancer the chance to be kids again. Camp Quality’s services and programs are created specifically to support children aged up to 15 years who are dealing with their own cancer diagnosis or the diagnosis of someone they love, like a brother, sister, mum, dad or carer.

Camp Quality provides kids, their siblings and parents with fun experiences, education, specialised cancer care, counselling and a supportive community that is delivered in

hospital, online, at school and away from it all on camps and retreats.

• Telephone: 1300 662 267
• Website 

Cancer Australia

Cancer Australia provides information for consumers, carers and their families including printed resources and video content.

• Website

Cancer Council’s Cancer Information and Support Service

Cancer Council 13 11 20 is a confidential telephone support service available to anyone affected by cancer. This service acts as a gateway to evidence-based documented, practical and emotional support available through Cancer Council services and other community organisations. Calls will be answered by a nurse or other oncology professional who can provide information relevant to a patient’s or carer’s situation. Health professionals can also access this service.

• Telephone: 13 11 20 – Monday to Friday, 9.00am to 5.00pm (some states have extended hours)
• Website

Cancer Council’s Cancer Connect

Cancer Connect is a free and confidential telephone peer support service that connects someone who has cancer with a specially trained volunteer who has had a similar cancer experience.

A Connect volunteer can listen with understanding and share their experiences and ways of coping. They can provide practical information, emotional support and hope. Many people newly diagnosed with cancer find this one-to-one support very beneficial.

For more information on Cancer Connect call Cancer Council on 13 11 20.

Canteen

Canteen helps adolescents, young adults and parents to cope with cancer in their family. Canteen offers individual support services, peer support services and a youth cancer service, as well as books, resources and useful links.

• Telephone: 1800 835 932 to talk to a health professional about information and support for young people or 1800 226 833 for other enquiries
• Website

CareSearch Children and Adolescents

CareSearch’s paediatric page provides information for children and adolescents with

life-limiting illness.

• Website 

Clinical trial information

For a collection of clinical trials available in Australia see the following sources of information:

• Cancer Australia
• Australian New Zealand Clinical Trials Registry
• Australasian Leukaemia and Lymphoma Group 
• ClinTrial Refer 
• Clinical Trials for an international view.

CanEAT pathway

A guide to optimal cancer nutrition for people with cancer, carers and health professionals.

• Education website
• Patient website 

Guides to best cancer care

The short guides help patients, carers and families understand the optimal cancer care that should be provided at each step. They include optimal timeframes within which tests or procedures should be completed, prompt lists to support patients to understand what might happen at each step of their cancer journey and to consider what questions to ask, and provide information to help patients and carers communicate with health professionals.

The guides are located on an interactive web portal, with downloadable PDFs available in multiple languages.

• Website

Kids Helpline

Kids Helpline is Australia’s only free (even from a mobile), confidential 24/07 online and phone counselling service for young people aged 5 to

25. Qualified counsellors at Kids Helpline are available via WebChat, phone or email anytime and for any reason.
    • Telephone: 1800 55 1800
    • Website

Look Good, Feel Better

A free national community service program, run by the Cancer Patients Foundation, dedicated to teaching cancer patients how to manage the appearance-related side effects caused by treatment for any type of cancer.

• Telephone: 1800 650 960
• Website

Leukaemia Foundation

The Leukaemia Foundation provides specialist support, funds leading-edge research and advocates for Australians diagnosed with blood cancer. The foundation guides patients and their loved ones through the emotional, physical and psychosocial challenges of a blood cancer diagnosis, treatment and survivorship.

The foundation’s team of qualified health professionals can answer questions, talk through concerns and connect patients to blood cancer support groups. The team can also help with practical concerns such as accommodation close to treatment, transport to appointments and financial assistance.

• Telephone: 1800 620 420
• Website 

MDS Foundation

The MDS Foundation is a global non-profit advocacy organisation that for more than 25 years has supported patients and their

families as well as healthcare providers in the fields of MDS and its related diseases. The foundation supports and educates patients, their communities and healthcare providers, and contributes to innovative research in the fields

of MDS and its related continuum of diseases to better diagnose, control and ultimately cure these diseases.

• Website
• Email 

Paediatric palliative care

Paediatric palliative care provides practical information about paediatric palliative care to families who have a child with a life-limiting illness, as well as the people who support them. Information is also available for health professionals to better support families and provide quality paediatric palliative care.

• Website 

Quitline

Quitline is a confidential, evidence-based telephone counselling service. Highly trained Quitline counsellors use behaviour change techniques and motivational interviewing over multiple calls to help people plan, make and sustain a quit attempt.

Quitline is a culturally inclusive service for all, and Aboriginal counsellors are also available. Health professionals can refer patients to Quitline online or via fax.

• Telephone: 13 7848
• Website or the relevant website in your state or territory.

Redkite

“Redkite is Australia’s leading childhood cancer support organisation, providing free practical, emotional and financial support for all members of families with a child with cancer (aged 18 or under). Redkite support is confidential and free to anyone connected to a child with cancer.

Support includes counselling for all members of the family including children, peer support

groups, financial assistance and help to connect with other relevant support services.”

• Telephone: 1800 733 548
• Website

Ronald McDonald House

Ronald McDonald Houses are a home-away- from-home for families of seriously ill children being treated at nearby hospitals. Rather than spending the night in a hospital waiting room, family members can stay in comfort at a Ronald McDonald House and receive support from staff, volunteers or other families that are sharing similar experiences.

• Telephone: 1300 307 642
• Website

Youth Cancer Service

Youth Cancer Services are hospital-based multidisciplinary teams providing care and support for 15–25-year-olds with cancer. In addition to providing high-quality, age-

appropriate cancer care, Youth Cancer Services provide leadership and support to other health professionals and services. There are five Youth Cancer Service lead sites across Australia linked to a network of more than 25 hospitals to enable every young person with cancer to access age- appropriate psychosocial and medical care.

Youth Cancer Services provide information for patients and healthcare providers on finding a Youth Cancer Service, the services offered, and many aspects of cancer treatment and life after cancer.

Website 

Australian Cancer Survivorship Centre

Australian Cancer Survivorship Centre The Australian Cancer Survivorship Centre provides expertise in survivorship care, information, support and education. Its purpose is to support and enable optimal survivorship care.

• Telephone: (03) 8559 6220
• Website 

Australian Commission on Safety and Quality in Health Care

The Australian Commission on Safety and Quality in Health Care has developed a guide for clinicians containing evidence-based strategies to support clinicians to understand and fulfil their responsibilities to cancer patients.

This guide is particularly relevant to Steps 3 to 6 of the optimal care pathway. The guide is titled NSQHS Standards user guide for medication management in cancer care for clinicians

Cancer Australia

Information for health providers including guidelines, cancer learnings, cancer guides, reports, resources, videos, posters and pamphlets.

• Website 

Cancer Council Australia

Information on prevention, research, treatment and support provided by Australia’s peak independent cancer authority.

• Website 

CanEAT pathway

A guide to optimal cancer nutrition for people with cancer, carers and health professionals.

• Education website
• Patient website 

eviQ

A clinical information resource providing health professionals with current evidence-based, peer-maintained, best practice cancer treatment protocols and information relevant to the Australian clinical environment.

• Website 

National Aboriginal Community Controlled Health Organisation

The National Aboriginal Community Controlled Health Organisation (NACCHO) is the national leadership body for Aboriginal and Torres Strait Islander health in Australia. NACCHO provides advice and guidance to the Australian

Government on policy and budget matters and advocates for community-developed solutions that contribute to the quality of life and improved health outcomes for Aboriginal and Torres Strait Islander people.

• Website

National Health and Medical Research Council

Information on clinical practice guidelines, cancer prevention and treatment.

• Website 

National consensus statement: essential elements for safe and high- quality paediatric end-of-life care

Produced by the Australian Commission on Safety and Quality in Health Care, the consensus statement  describes the elements that are essential for delivering safe and high-quality end-of-life care to children in acute care settings in Australia.

Optimal care pathway for adolescents and young adults with cancer

At the time of publication, a population based optimal care pathway for adolescents and young adults with cancer was under development. This resource provides a tool to help guide system safety and responsiveness to the unique needs of adolescents and young adults diagnosed with cancer and improve outcomes and experience. It can be used in conjunction with the optimal care pathway for each cancer type.

• Website 

Quality of Care Collaborative Australia The QuoCCA project delivers paediatric palliative care education to health professionals in urban,

rural, regional and remote areas who may care

for children and young people with palliative and end-of-life care needs.

• Website

Thinking ahead framework

The Thinking ahead framework helps plan ahead for interventions that reflect the preferences of the child and their family and the recommendations of the treating team in the event of an acute deterioration.

• Telephone: (03) 9345 5522
• Website

Youth Cancer Service

Youth Cancer Services are hospital-based multidisciplinary teams providing care and support for 15–25-year-olds with cancer. There are five Youth Cancer Service lead sites across Australia linked to a network of more than 25 hospitals.

Youth Cancer Services teams conduct outreach and secondary consultations with their colleagues across the health system to support best practice care of young cancer patients, regardless of treatment setting.

Each state/territory adapts this coordinated, multidisciplinary model of care to align with local needs, network structures, local frameworks and broader adult and paediatric service models.

Integration with primary and community-based care is critical both in facilitating referrals into Youth Cancer Service teams and ensuring continuity of care post-treatment.

The overall program is coordinated at the national level by Canteen. This facilitates a consistent national approach to youth cancer care and drives critical national initiatives, including professional development, national data collection and research, improved access to clinical trials and the development and implementation of national guidelines.

Importantly, young people with cancer and their families are engaged and consulted at all stages of development, implementation and delivery of the Youth Cancer Services program to ensure optimal outcomes for young Australian cancer patients (Canteen Australia 2017, p. 8).

Website 

We acknowledge the Traditional Owners of Country throughout Australia and their continuing connection to the land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.

This work is available from the Leukaemia Foundation website and from the Cancer Council website

This edition published in October 2021. ISBN: 978-0-6453299-0-2

Leukaemia Foundation and Australian Government Department of Health 2021, Optimal care pathway for children, adolescents and young adults with acute leukaemia, 1st edn, Leukaemia Foundation of Australia.

Enquiries about this publication can be sent to bloodcancerpartnerships@leukaemia.org.au.

Our thanks to the following health professionals, consumer representatives, stakeholders and organisations consulted in developing this optimal care pathway.

Dr Caroline M Bateman (Chair), Paediatric Haematologist and Oncologist, Cancer Centre for Children, The Children’s Hospital at Westmead

Dr Frank Alvaro, Paediatric Oncologist, John Hunter Children’s Hospital

Kate Arkadieff, Blood Cancer Support Coordinator, Leukaemia Foundation

Dr Nicole Armitage, Paediatric Palliative Care Specialist, Bear Cottage, Sydney Children’s Hospital Network

Justine Carder, Program Manager,

Victorian Paediatric Integrated Cancer Service, Melbourne

Dr Chris Fraser, Paediatric Oncologist, Queensland Children’s Hospital

Dr Matthew Greenwood, Haematologist and Bone Marrow Transplant Physician, Royal North Shore Hospital, Sydney and Northern Clinical School, University of Sydney

Dr Diane Hanna, Paediatric Oncologist and Bone Marrow Transplant Physician, The Royal Children’s Hospital Melbourne

Dr Ian Irving, Haematologist, Icon Group

Amber Laidler, Blood Cancer Support Coordinator, Leukaemia Foundation

Dr Michael Osborn, Haematologist, Paediatric, Adolescent and Young Adult Oncologist, Women’s and Children’s Hospital,

Royal Adelaide Hospital

Dr Bhavna Padhye, Paediatric Oncologist, Cancer Centre for Children, The Children’s Hospital at Westmead

Associate Professor Pandora Patterson, General Manager, Research, Policy, and Patient

Programs, Canteen Australia, University of Sydney, Faculty of Medicine and Health

Kelly Kajewski, Consumer (Parent) Representative

Tim Rogers, Head of Professional Standards and Practise, Redkite

Dr Genia Rozen, Fertility Specialist and Gynaecologist, Royal Women’s Hospital, Melbourne IVF, University of Melbourne

Associate Professor Kate (Catharyn) Stern, Gynaecologist, Reproductive Endocrinologist and Infertility Specialist, Royal Women’s Hospital, Melbourne IVF

Chris Williams, Nurse Consultant (Paediatric Oncology), Victorian Paediatric Integrated Cancer Service, Royal Children’s Hospital Melbourne

Jacqueline Yates, Consumer Representative

Dr Draga Barbaric, Paediatric Oncologist and Bone Marrow Transplant Physician, Sydney Children’s Hospital, UNSW Sydney

Professor Mark Hertzberg, Haematologist, Prince of Wales Hospital, University of Sydney

Associate Professor Rishi S Kotecha, Paediatric Oncologist and Haematologist, Perth Children’s Hospital Laboratory Head, Leukaemia Translational Research Laboratory, Telethon Kids Cancer Centre, Telethon Kids Institute

Dr Sally Mapp, Haematologist, Princess Alexandra Hospital, Brisbane

Dr Leanne Super, Paediatric Oncologist, Monash Children’s Hospital, Royal Children’s Hospital, Monash University Affiliate Lecturer

Dr Meaghan Wall, Haematologist and Genetic Pathologist, Victorian Clinical Genetics Services, Haematology Society of Australia and New Zealand

Australian Capital Territory Health

Allied Health Professions Australia

Australian and New Zealand Children’s Haematology/Oncology Group

Australia and New Zealand Transplant and Cellular Therapies

Australasian Association of Nuclear Medicine Specialists

Australasian College of Emergency Medicine

Australasian Leukaemia and Lymphoma Group Australian and New Zealand Society

of Palliative Care

Australian College of Nursing

Australian College of Rural and Remote Medicine

Australian Government Department of Health and Ageing

Australian Medical Association Beyond Blue

Cancer Australia

Cancer Council of Australia Cancer Council Victoria Cancer Institute NSW

Cancer Nurses Society of Australia Canteen

Clinical Oncology Society of Australia Haematology Society of Australia & New Zealand Launceston General Hospital

Leukaemia Foundation Lymphoma Australia

Medical Oncology Group of Australia Myeloma Australia

Northern Territory Department of Health

Palliative Care Australia

Private Cancer Physicians of Australia Queensland Health

Rare Cancers Australia Redkite

Royal Australasian College of Physicians

Royal Australian and New Zealand College of Radiologists

Royal College of Pathologists of Australasia South Australia Health

Tasmanian Department of Health and Human Services

The Royal Australian College of General Practitioners

Victorian Department of Health

Western Australia Cancer and Palliative Care Network

Associate Professor Peter Mollee (Chair), Haematologist Princess Alexandra Hospital, Australasian Leukaemia and Lymphoma Group, Associate Professor, University of Queensland

Dr Caroline M Bateman, Paediatric Haematologist and Oncologist, Cancer Centre for Children, The Children’s Hospital at Westmead

Julia Brancato, Optimal Care Pathways Project Coordinator, Cancer Council Victoria

Dr Peter Diamond, Project Secretariat, Leukaemia Foundation

Associate Professor Michael Dickinson, Haematologist, Lymphoma Australia, Peter MacCallum Cancer Centre, Royal Melbourne Hospital, University of Melbourne

Associate Professor Anoop Enjeti, Clinical Haematologist, John Hunter Hospital, Senior Staff Haematologist, Calvary Mater Hospital, Conjoint Associate Professor, University of Newcastle

Emily Forrest, Project Secretariat, Leukaemia Foundation

Fiona Haigh, Project Secretariat, Leukaemia Foundation

Deborah Henderson, Consumer Representative

Professor Tim Hughes, Haematologist, South Australian Health and Medical Research Institute (SAHMRI), University of Adelaide, Royal Adelaide Hospital

Professor Steven Lane, Clinical Haematologist, Royal Brisbane and Women’s Hospital, QIMR Berghofer Medical Research Institute, University of Queensland

Caroline Nehill, Director National Cancer Control, Cancer Australia

Professor H Miles Prince AM, Clinical Haematologist, Epworth Healthcare and Haematologist, Peter MacCallum Cancer Centre

Professor Hang Quach, Haematologist, University of Melbourne, St Vincent’s Hospital Melbourne

Catriona Rafael, Project Secretariat, Leukaemia Foundation

Professor Andrew Roberts AM, Haematologist and Bone Marrow Transplant Physician, Royal Melbourne Hospital, Peter MacCallum Cancer Centre, University of Melbourne, Walter and Eliza Hall Institute

Professor John Seymour AM, Clinical Haematologist, Peter MacCallum Cancer Centre, Royal Melbourne Hospital, University of Melbourne

Delaine Smith, Chief Executive Officer, Australasian Leukaemia and Lymphoma Group

Professor Judith Trotman, Haematologist, Concord Repatriation General Hospital, University of Sydney

Megan Varlow, Director Cancer Control Policy, Cancer Council Australia

Dr Nicole Wong Doo, Clinical and Laboratory Haematologist, Concord Repatriation and General Hospital, University of Sydney

Our thanks also to the Blood Cancer Taskforce, which recommended the development of optimal care pathways for all the major blood cancer subtypes as part of the National Strategic Action Plan for Blood Cancer (2020). The National Action Plan was commissioned by the Federal Government and developed by the Blood Cancer Taskforce, with support from the Leukaemia Foundation.