The causes of CML are not fully understood, and there is no evidence that CML can be prevented. However, in Australia, early detection is common because a full blood count is often ordered routinely or patients present to their general practitioner with tiredness, weight loss, malaise or symptoms related to an enlarged spleen.

The risk factors for developing CML include:

• gender – males are at a slightly higher risk of developing CML
• radiation exposure – exposure to high-dose radiation (e.g. nuclear disaster) can increase the risk of CML, but this is rarely relevant in Australia.

While there is no evidence linking lifestyle changes to reduced risk of CML, it is important to encourage people to reduce modifiable risk factors for other types of cancer and health conditions. This includes providing advice on preventing or reducing obesity and support to quit smoking.

General practitioners should be aware of the possibility of CML in patients with leucocytosis, or those with non-specific symptoms of fatigue, weight loss, sweats and malaise. Early satiety and abdominal discomfort may be related to progressive splenomegaly. Most cases of mild leucocytosis with neutrophilia will be due to other causes, but a PCR test for BCR-ABL1 to screen for CML should be ordered if the white cell count is over 25, leucocytosis or thrombocytosis is confirmed on a repeat blood test, or there are features on the blood film that raise the possibility of CML.

About half of patients with CML are asymptomatic. CML is frequently diagnosed after blood tests are taken for unrelated reasons. Typical symptoms include fatigue, malaise, weight loss, sweats and symptoms related to an enlarged spleen.

General practitioner examinations and investigations should include the following:

• a thorough history and examination should be taken, specifically looking for evidence of splenomegal.
• a full blood count will usually indicate the strong possibility of CML based on the increased numbers of white blood cells (WBC) and/or platelets and the WBC differential. A pathologist report on the blood test will usually raise the possibility of CML based on the blood count and blood film, but this may not always be the case. Very occasionally, CML can present with a high platelet count and a minimally raised WBC

• the diagnosis can be confirmed by a PCR test on the peripheral blood to detect the BCR-ABL1 transcript in patients with a blood picture consistent with CML. This may be a quantitative or qualitative test.

Any patient with symptoms suspicious of cml can be referred for specialist assessment as first line. If the diagnosis of cml is confirmed or the results are inconsistent or indeterminate, referral to a haematologist for ongoing management is warranted.

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 choices and informed financial consent on page 9), 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 cml should include the following essential information to accurately triage and categorise the level of clinical urgency:

• important psychosocial history and relevant medical history
• 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

The following clinical prioritisation criteria are used to triage patients with cml.

According to the cml International Working Group guidelines, updated in 2018, cml is diagnosed when there are more than 5.0 × 109/L B lymphocytes in the peripheral blood for at least three months and clonality is confirmed by demonstrating immunoglobulin light-chain restriction on flow cytometry (Hallek et al. 2018). Lower levels of clonal B-cell lymphocytosis may suggest the related disorder known as monoclonal B-cell lymphocytosis and should also be referred to a specialist.

Referral to a specialist should take place once significant lymphocytosis and/or a leukaemic cell population is identified.

In most cases, cml is diagnosed incidentally based on minor peripheral blood lymphocytosis in patients who are either well or have minimal symptoms. In these typical cases, urgent referral and work-up are not required to prevent physical deterioration. However, the differential diagnosis of cml can be very stressful for patients, so a timely referral to enable clarity and reassurance is an important consideration.

It is also important to assess for uncommon but more medically urgent cases.

Cases that require prompt referral to a specialist within 72 hours are:

• severe/(symptomatic) thrombocytopenia or anaemia such as haemoglobin under 70 g/L or platelets under 50 × 109/L, or
• bulky (> 5 cm) or locally compressive

The specialist should then assess the patient within 72 hours, or sooner if medically urgent based on specific circumstances.

In more typical cases where referral is less urgent, it will be important for the general practitioner to provide reassurance and clearly explain the slow-growing nature of cml, noting that typically intervention is not needed for several years, and up to one-third of patients may never require treatment (Scarfò et al. 2016). This is in contrast to acute forms of leukaemia.

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

The treatment team, after taking a thorough medical history and making a thorough medical examination of the patient, including specifically documenting spleen size, should undertake the following investigations under the guidance of a specialist.

Minimum established tests:

• real-time quantitative RT-PCR test to detect and measure the level of BCR-ABL1 on the international scale
• biochemistry screen including liver function tests, electrolytes, renal function tests, urate, lipase and amylase, blood sugar level
• HIV, hepatitis B and hepatitis C serology
• electrocardiogram.

Investigations that should be done in most circumstances:

• bone marrow aspiration including cytogenetics, immunophenotyping/flow cytometry and morphology (exceptions can be made for frail or very elderly patients)
• fasting lipids (not essential if the patient will receive frontline imatinib)
• chest x-ray (not essential for young, healthy patients).

The following tests are important in cases where a second-generation tyrosine kinase inhibitor (TKI) is being considered in a patient who may have a high risk of vascular disease (based on age or other factors):

• ankle brachial index
• Doppler study of neck and leg arteries
• cardiac echocardiogram.

Determining the phase of disease is a critical element of treatment planning and should be clearly documented in the patient’s medical record.

There are three phases of CML: chronic, accelerated and blast phase. They are described in more detail in the European LeukemiaNet 2020 recommendations for treating CML (Hochhaus et al. 2020).

More than 90 per cent of patients are diagnosed in the chronic phase (Hochhaus et al. 2017). The following tests are used to determine the phase of CML:

• investigations for extramedullary disease
• percentage of blasts, basophils and platelet count in the peripheral blood
• bone marrow morphology – a report should specifically state the phase of disease.

Patients with chronic phase CML should have their risk category assessed using an accepted scoring system. Currently, the EUTOS long-term survival (ELTS) score is preferred (Hochhaus et al. 2020).

The ELTS factors in age, spleen size, blasts in peripheral blood and platelet count to predict long-term survival and support treatment selection (European LeukaemiaNet 2020).

The treating haematologist should discuss and develop a treatment plan with the patient within two weeks of completing investigations.

Participation in clinical trials, patient registries and tissue banking, where available, is encouraged

for patients with CML. Cross-referral between clinical trials centres should be encouraged to facilitate participation.

For more information visit:

• Cancer Australia 
• Australian New Zealand Clinical Trials Registry 
• Australasian Leukaemia & Lymphoma Group
• ClinicalTrials.gov for an international view.

Participation in clinical trials, patient registries and tissue banking, where available, is encouraged for patients with cml. Cross-referral between clinical trials centres should be encouraged to facilitate participation.

For more information visit:

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

The intent of treatment can be defined as one of the following:

• curative
• anti-cancer therapy to improve quality of life and/or longevity without expectation of cure
• symptom palliation.

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 potential benefits need to be balanced against the morbidity and risks of treatment.

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 should also be considered during this decision-making process. Patients 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.

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).

Initial treatment for patients diagnosed with CML will depend on several factors.

For patients in the chronic phase with a WBC under 100 and platelets below 800, there is no urgency to start therapy.

Prior to choosing a TKI, patients with chronic phase CML should be assessed for comorbidities and CML risk category using an accepted scoring system. ELTS is the preferred CML scoring system currently. This should be recorded in the notes and in correspondence with their general practitioner.

Palliative care is a multidisciplinary approach to symptom management, psychosocial support and assistance in identifying care goals for patients with serious illness and their families.

For patients in blast phase, early referral to palliative care can improve the quality of life and in some cases may have survival benefits.

The lead clinician should ensure patients receive timely and appropriate referral to palliative care services. Referral should be based on need rather than prognosis. Emphasise the value of palliative care in improving symptom management and quality of life to patients and their carers.

The ‘Dying to Talk’ resource may help health professionals when initiating discussions with patients 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).

Patients, with support from their family or carer and treating team, should be encouraged to consider appointing a substitute decision-maker and to complete an advance care directive.

Refer to step 6 for a more detailed description of managing patients with refractory or relapsed disease.

More information

These online resources are useful:

• Advance Care Planning Australia 
• Care Search 
• Dying to Talk
• the Palliative Care resource kit 
• Palliative Care Australia (for patients and carers) 

Participation in clinical trials, patient registries and tissue banking, where available, is encouraged for patients with CML. Cross-referral between clinical trials centres should be encouraged to facilitate participation. 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 
  • ClinTrial Refer 
  • Clinical Trials for an international view.

Patients starting on TKI therapy need regular haematological monitoring, at least weekly for the first four weeks and then monthly for the next three months, to detect haematological remission and cytopenias from therapy.

Outside of clinical trials, peripheral blood monitoring of the BCR-ABL level should be undertaken at three months, and then every three months indefinitely to help assess treatment response and aid adherence. In patients with stable low BCR-ABL tests and reliable compliance, testing every four months may be reasonable.

Haematologist reviews should continue on a three- to six-monthly basis, either in person or via telehealth if appropriate.

Close liaison between the patient, general practitioner and haematologist is required to optimise or reduce cardiovascular risk factors while on therapy. A team including a haematologist, general practitioner and specialist nurse is optimal to support patient education and adherence and to manage side effects.

Patients should be informed about common side effects of TKI medication so they can recognise these as they occur. Depending on the TKI, patients should be educated about the warning signs of potentially serious side effects including pancreatitis, cardiovascular disease, pleural effusions and pulmonary hypertension.

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.

Regular monitoring is essential due to the ongoing risk of losing disease control, both during and after TKI therapy. Monitoring the BCR-ABL level by PCR is indicated every three to four months. Patients will generally need to see their haematologist every three to six months to assess disease control, drug adherence and risk factors for vascular disease, and to ensure any symptoms and organ toxicities are addressed promptly. Any new developments in monitoring, treatment and/

or drug toxicities should be communicated promptly to the patient. For patients who are not living within easy reach of their haematologist, these responsibilities may be shared with the general practitioner and telehealth reviews can be incorporated where appropriate.

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).
  

For CML patients in blast phase who require chemotherapy or an allogeneic stem cell transplant, a more structured survivorship plan is indicated.

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
• a process for rapid re-entry to specialist medical services for suspected recurrence.

Survivors generally need regular follow-up for the rest of their life. 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 conditions.

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
• org.au
• South Australian Cancer Service – Statewide Survivorship Framework resources
• American Society of Clinical Oncology – guidelines

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 more information visit:

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

Nearly all patients with CML are asymptomatic, so refractory or relapsed disease is generally picked up during monitoring of molecular response. This can be assessed using the ratio of BCR-ABL1 transcripts to the control gene transcripts. According to the European LeukemiaNet

2020 recommendations for treating CML, a BCR-ABL1 of greater than 10 per cent at three months indicates treatment failure when confirmed (Hochhaus et al. 2020).

It is important to assess for the reason why the patient is not responding well to treatment. They may be resistant to TKIs, they may not be adhering to treatment for various reasons, or they may be experiencing drug interactions (Hochhaus et al. 2017).

Patients with treatment failure should have a bone marrow examination to determine/confirm the CML phase and document clonal cytogenetic changes. CML cells should be tested for their BCR–ABL1 mutational profile to help select an appropriate TKI (Hochhaus et al. 2017).

Mutational analysis is recommended for patients who:

• develop accelerated or blast phase CML
• experience treatment failure on their current TKI therapy.

According to the European LeukemiaNet 2020 guidelines (Hochhaus et al. 2020), mutations account for about a third of treatment-resistant cases in patients in the chronic phase and about two-thirds of treatment-resistant cases in patients in accelerated or blast phase.

Managing patients who are not achieving optimal response is complex. Each patient should be evaluated to determine if referral to a multidisciplinary team is necessary. 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.

If there is an indication that a patient’s CML is not responding optimally or has re-emerged after a period of control, care should be provided under the guidance of a treating specialist. Each patient should be evaluated to determine if referral to a multidisciplinary team is necessary.

When managing people with CML who have treatment failure or resistance, treatment will depend on the degree and timing of failure, mutation analysis, age, comorbidities and adherence and toxicity to prior TKIs. Note that poor compliance with TKI therapy is the most common reason for treatment failure.

Treatment may include:

• second-line treatment with a second- or third-generation TKI
• third-line treatment with an alternative TKI such as ponatinib or asciminib, or an allogeneic stem cell transplant
• allogeneic stem cell transplantation for eligible patients who no longer have an effective TKI option or for those with blast phase disease who have achieved a second chronic phase.

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

Encourage early referral to clinical trials or accepting an invitation to participate in research.

Advance care planning is important for all patients with a cancer diagnosis but especially those with advanced disease. Patients should be encouraged to think and talk about their healthcare values and preferences with family or carers, appoint a substitute decision-maker and consider developing an advance care directive to convey their preferences for future health care in the event they become unable to communicate their wishes (Australian Government Department of Health 2021a).

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.

Timely referral to palliative care can improve the quality of life and in some cases may be associated with survival benefits. 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.

The lead clinician should ensure timely and appropriate referral to 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 more information visit:

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

In the case of blast phase CML, if the treatment team does not include a palliative care member, the lead clinician should consider referring the patient to palliative care services, with the general practitioner’s engagement. This may include inpatient palliative unit access (as required).

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 these services:

• 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
• Advance Care Planning Australia 

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 
  • ClinTrial Refer 
  • Clinical Trialsfor an international view.

Cancer is the third leading cause of burden of disease for Aboriginal and Torres Strait Islander people. While Australia’s cancer survival rates are among the best in the world, Aboriginal and Torres Strait Islander people continue to experience a different pattern of cancer incidence and significant disparities in cancer outcomes compared with non-Indigenous Australians.

For Aboriginal and Torres Strait Islander people, health and connection to land, culture, community and identity are intrinsically linked. Health encompasses a whole-of-life view and includes a cyclical concept of life–death–life.

The distinct epidemiology of cancer among Aboriginal and Torres Strait Islander people, and unique connection to culture, highlight the need for a specific optimal care pathway for Aboriginal and Torres Strait Islander people with cancer. Ensuring this pathway is culturally safe and supportive is vital to tackling the disparities for Aboriginal and Torres Strait Islander people.

Published in 2018, the Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer provides guidance to health practitioners and service planners on optimal care for Aboriginal and Torres Strait Islander people with cancer across the cancer continuum.

In addition to the key principles underpinning tumour-specific pathways, these are the key concepts that are fundamental to Aboriginal and Torres Strait Islander health:

• providing a holistic approach to health and wellbeing
• providing a culturally appropriate and culturally safe service
• acknowledging the diversity of Aboriginal and Torres Strait Islander peoples
• understanding the social determinants and cultural determinants of health (Cancer Australia 2015).

To view the Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer, visit the Cancer Australia website . To view the consumer resources – Checking for cancer and Cancer, visit the Cancer Australia website 

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 National Disability Insurance Scheme (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 

Planning and delivering appropriate cancer care for older people can present a number of challenges. This could also be true for frail people or those experiencing comorbidities. Effective communication between oncology and geriatrics departments will help facilitate best practice care, which takes into account physiological age, complex comorbidities, risk of adverse events and drug interactions, as well as the implications of cognitive impairment on suitability of treatment and consent (Steer et al. 2009).

At a national interdisciplinary workshop convened by the Clinical Oncology Society of Australia,

it was recommended that people over the age of 70 undergo some form of geriatric assessment, in line with international guidelines (COSA 2013; palliAGED 2018). Screening tools can be used to identify those patients in need of a comprehensive geriatric assessment (Decoster et al. 2015).

This assessment can be used to help determine life expectancy and treatment tolerance and guide appropriate referral for multidisciplinary intervention that may improve outcomes (Wildiers et al. 2014).

Frailty is not captured through traditional measures of performance status (e.g. ECOG) and includes assessment in the domains of:

• function
• comorbidity
• presence of geriatric syndromes
• nutrition
• polypharmacy
• cognition
• emotional status
• social

In recent years, adolescent and young adult oncology has emerged as a distinct field due to lack of progress in survival and quality-of-life outcomes.

The significant developmental change that occurs during this life stage complicates a diagnosis of cancer, often leading to unique physical, social and emotional effects for young people at the time of diagnosis and throughout the cancer journey (Smith et al. 2012).

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

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.

Figure A1: Fitch’s tiered approach to supportive care

Consider a referral to a psychologist, psychiatrist, pastoral/spiritual care practitioner, social worker, specialist nurse or a relevant community-based program if the patient 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 advanced disease
• having difficulties quitting smoking (refer to Quitline on 13 7848) or with other drug and alcohol use
• having difficulties transitioning to palliative care.

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 strategies.

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

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

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

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 

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.

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 

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: 978-0-6453299-3-3

Leukaemia Foundation and Australian Government Department of Health 2021, Optimal care pathway for people with chronic myeloid leukaemia, 1st edn, Leukaemia Foundation of Australia.

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

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

Professor Susan Branford, Medical Scientist, SA Pathology, Centre for Cancer Biology, University of South Australia and University of Adelaide

Associate Professor, Haematologist, Peter MacCallum Cancer Centre

Lisa Carne, Registered Nurse/Project Manager, South Australian Health and Medical Research Institute

Associate Professor Nada Hamad, Haematologist, Bone Marrow Transplant Physician, St Vincent’s Hospital Sydney, UNSW Sydney and University of Notre Dame Australia

Dr Janice Newton, General Practitioner and Consumer Representative

Dr Anthony Mills, Haematologist,

Princess Alexandra Hospital, Greenslopes Private Hospital, University of Queensland

Karen Szymanski, Blood Cancer Support Coordinator, Leukaemia Foundation

Laura Watson, Blood Cancer Support Coordinator, Leukaemia Foundation

Associate Professor Agnes Yong, Haematologist, Royal Perth Hospital

Professor Andrew Grigg, Haematologist, Austin Hospital

Dr Shir-Jing Ho, Haematologist, St George Hospital

Dr Bill Renwick, Haematologist,

The Royal Melbourne and Western hospitals

Dr Courtney Tate, Haematologist, Director of Laboratory Haematology, Princess Alexandra Hospital, Queensland Health

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 & 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 & 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, 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, 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, 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, Haematologist, Peter MacCallum Cancer Centre, Royal Melbourne Hospital, University of Melbourne

Delaine Smith, Chief Executive Officer, Australasian Leukaemia & 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, 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.