Blood Cancer – Myelodysplastic Syndromes

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Optimal care pathways map seven key steps in cancer care. Each of these steps outlines nationally agreed best practice for the best level of care. While the seven steps appear in a linear model, in practice, patient care does not always occur in this way but depends on the particular situation (e.g. the type of cancer, the age of the patient, when and how the cancer is diagnosed, prognosis, management, the patients and carers decisions and their physiological response to treatment).

The principles underpinning optimal care pathways always put patients at the centre of care throughout their experience and prompt the healthcare system to deliver coordinated care.

The optimal care pathways do not constitute medical advice or replace clinical judgement, and they refer to clinical guidelines and other resources where appropriate.

The optimal care pathway

 

Evidence-based guidelines, where they exist, should inform timeframes. Treatment teams need to recognise that shorter timeframes for appropriate consultations and treatment can promote a better experience for patients. Three steps in the pathway specify timeframes for care (Figure 3). They
are designed to help patients understand the timeframes in which they can expect to be assessed and treated, and to help health services plan care delivery in accordance with expert-informed time parameters to meet the expectation of patients. These timeframes are based on expert advice from the MDS Working Group.

Timeframes for care

Step in pathway Care point Timeframe
Presentation, initial investigations and referral Signs and symptoms Presenting symptoms should be promptly and clinically triaged with a health professional.
Initial investigations initiated by GP Investigations usually begin within days to a few weeks of detecting cytopenias, depending on the symptoms and acuteness of the presentation. The GP should have results and review the patients within 4 weeks, or sooner if they are acutely unwell.
Referral to specialist Investigations begin depending on symptoms and acuteness of presentation, usually within 4 weeks of receiving initial test results. Urgent referral should occur within 2 weeks if listed indicators of concern are observed.
Diagnosis, staging and treatment planning Diagnosis and staging Timing of diagnostic Investigations should be guided by symptoms and acuteness of presentation. Results of initial diagnosis work-up are usually returned within several weeks, but specialist testing may take longer.
Multidisciplinary meeting and treatment planning If indicated for the patient, the multidisciplinary team should meet to discuss newly diagnosed patients before definitive treatment.
Treatment Specific therapies for lower and higher risk Lower risk MDS treatment is guided by clinical presentation and urgency. Higher risk MDS treatment should begin within 6 weeks of initial specialist consultation. Ongoing close monitoring could be considered depending on the patient’s circumstances
Allogeneic stem cell transplant Guided by clinical presentation and urgency for higher risk and occasionally lower risk MDS. Early referral to transplant is recommended for patients under 70 years of age and with higher risk MDS. However age-specific frailty score and performance status should be considered.

Seven steps of the optimal care pathway

Step 1: Prevention and early detection

Step 2: Presentation, initial investigations and referral step

Step 3: Diagnosis, staging and treatment planning

Step 4: Treatment

Step 5: Care after initial treatment and recovery

Step 6: Managing refractory, relapsed, residual or progressive disease

Step 7: End-of-life care

This pathway covers myelodysplastic syndromes (MDS) in adults. MDS comprises a heterogenous group of myeloid disorders with a highly variable clinical course, characterised by ineffective haematopoiesis leading to blood cytopenias. MDS progresses to acute myeloid leukaemia (AML) in approximately 30 per cent of cases (Granfeldt Østgård et al. 2015).

In 2021, the yearly incidence rate of MDS in Australian adults was estimated to be 4.7 cases per 100,000, with a five-year relative survival rate of 37 per cent. The median age of diagnosis in Australia was estimated to be 78 years of age, with 93 per cent of all patients diagnosed over the age of 60 (AIHW 2021). MDS is a blood cancer related to leukaemia causing bone marrow failure. Higher risk MDS has a prognosis equivalent to other high-risk blood cancers.

This step outlines recommendations for the prevention and early detection of MDS.

Evidence shows that not smoking, avoiding or limiting alcohol intake, eating a healthy diet, maintaining a healthy body weight, being physically active, being sun smart and avoiding exposure to oncoviruses or carcinogens may help reduce cancer risk (Cancer Council Australia 2018).

The causes of MDS are not fully understood, and there is currently no clear prevention strategy.

The risk factors for developing MDS include the following:

  • Age – MDS affects older people, and 93 per cent of all those diagnosed are over the age of 60.
  • Gender – MDS is more common in males than females.
  • Exposure to environmental/occupational hazards – long-term exposure to benzene, tobacco smoke, insecticides, radiation and other toxins may increase the risk of developing MDS.
  • Previous chemotherapy or radiation treatment – treatment using alkylating agents and purine analogues, radiotherapy or ionising radiation may increase the risk of developing secondary MDS.
  • An inherited predisposition to MDS is seen in one-third of paediatric MDS patients, including Down syndrome, Fanconi’s anaemia and neurofibromatosis. Work-up for such inherited syndromes may be considered when reviewing a young patient with MDS.

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

Patients with mild cytopenia can be identified early on by full blood examination. Others may present with symptoms such as fatigue, bruising or recurrent infections (see section 2.1 Signs and symptoms).

Some patients with cytopenia may not meet the criteria for MDS and may be categorised as clonal cytopenia of uncertain significance. The clinical significance of such a diagnosis is uncertain, and follow-up with general practitioner (until more severe cytopenia(s) occur) may be appropriate for such patients.

Routine screening for MDS is not currently recommended in either the general population or in relatives of people with MDS.

This step outlines the process for the general practitioner to initiate the right investigations and refer to the appropriate specialist in a timely manner. The types of investigations the general practitioner undertakes will depend on many factors, including access to diagnostic tests, the availability of medical specialists and patient preferences.

Some people with MDS are asymptomatic with no signs or symptoms identified with cytopenia on routine blood testing. The monitoring strategy includes excluding reversible causes and referral if they persist. Many people with MDS have a combination of symptoms. This is because the production of some or all of the blood cell types may be affected by the disease.
The following signs and symptoms should be investigated (Bewersdorf et al. 2020):

  • persistent tiredness and fatigue
  • weakness
  • shortness of breath with minimal exercise
  • looking pale
  • recurring infections, especially chest infections
  • fevers
  • sore mouth due to mouth ulcers
  • easy bruising
  • purpura – a rash of small red dots, seen often on the lower limbs initially, due to small superficial capillary bleeds known as petechiae
  • tendency to bleed from the nose and gums.

The presence of multiple signs and symptoms, particularly in combination with other underlying risk factors, indicates an increased risk of MDS.

Investigations should begin within days to a few weeks of detecting cytopenias, depending on the symptoms and acuteness of the presentation.

General practitioner examinations and investigations should include:

  • patient history and physical examination
  • blood tests to detect abnormalities and exclude other diagnoses – for example: full blood cell count and film review (Sekeres & Cutler 2014), reticulocyte counts, lactate dehydrogenase, autoimmune screen (ANA/ENA), blood group, B12/folate and iron studies, electrolytes, liver function, renal function, blood cell, haemolysis and thyroid function (where clinically appropriate) and serum electrophoresis serologies for chronic viral infections such as hepatitis C, hepatitis B and HIV.

The general practitioner should have results and review the patient within four weeks, or sooner if they are acutely unwell.

If the cancer diagnosis is confirmed or the results are inconsistent or indeterminate, the general practitioner must refer the patient to a specialist physician to make the diagnosis.

It is important to consider the patient’s overall health, including comorbidities and frailty. In certain circumstances if MDS is suspected and patients have mild cytopenias and significant comorbidities, they may be safely monitored by the general practitioner.

Patients should be enabled to make informed decisions about their choice of specialist and health service. General practitioners should make referrals in consultation with the patient after considering the clinical care needed, cost implications (see referral options and informed financial consent 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 MDS 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 required.

The following clinical prioritisation criteria are used to triage patients with MDS. Urgent referral should occur within two weeks of initial work-up.
Any of the following indicators requires urgent referral:

  • severity of cytopenias – neutrophils < 0.5 × 10^9/L or neutrophils > 0.5 and recurrent infections needing antibiotics
  • platelets < 30 × 10^9/L or bleeding symptoms even if platelets are above threshold
  • symptomatic unexplained anaemia or haemoglobin < 80 g/L.

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.
For Aboriginal-led health information and services visit the NACCHO website.

Urgency of investigation depends on the severity of cytopenias and clinical presentation. In most cases this should occur within four weeks of receiving all initial tests. Urgent referral should occur within two weeks if listed indicators of concern are observed.

The patient’s general practitioner should consider an individualised supportive care assessment where appropriate to identify the needs of an individual, their carer and family. Refer to appropriate support services as required. See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific needs may arise for patients at this time:

  • assistance for dealing with the emotional distress and/or anger of dealing with a potential cancer diagnosis, anxiety/depression, interpersonal problems and adjustment difficulties
  • management of physical symptoms
  • encouragement and support to increase levels of exercise (Cormie et al. 2018; Hayes et al. 2019).

For more information refer to the National Institute for Health and Care Excellence 2015 guidelines, Suspected cancer: recognition and referral.

For additional information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

The general practitioner is responsible for:

  • providing patients, and their families and carers with information that clearly describes to whom they are being referred, the reason for referral and the expected timeframes for appointments
  • requesting that patients notify them if the specialist has not been in contact within the expected timeframe
  • considering referral options for patients living rurally or remotely
  • supporting the patient while waiting for the specialist appointment (Cancer Council 13 11 20 and Leukaemia Foundation 1800 953 081 are available to act as a point of information and reassurance during the anxious period of awaiting further diagnostic information).

Patients can also visit the Leukaemia Foundation’s website  or call 1800 620 420 for emotional and practical support.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Step 3 outlines the process for confirming the diagnosis and stage of cancer and for planning subsequent treatment. The guiding principle is that interaction between appropriate multidisciplinary team members should determine the treatment plan.

The treatment team, after taking a thorough medical history and making a thorough medical examination of the patient, may need to undertake additional investigations under the guidance of a specialist.

Although the diagnosis of MDS is confirmed by a bone marrow biopsy, it may be reasonable to monitor the patient rather than proceed to bone marrow biopsy. This will depend on the severity of cytopenias, patient request, age, comorbidities and the need for therapeutic intervention.

Further investigations and blood tests to exclude other causes of cytopenias and dysplasia should be completed.

Diagnosis and prognosis of MDS is based on peripheral blood and bone marrow aspirate and trephine. Investigations of the bone marrow aspirate may include (Sekeres & Cutler 2014):

  • immunophenotyping
  • cytogenetics and, in some circumstances, FISH studies
  • molecular testing or a myeloid gene panel test for some patients.

Urgency of investigation timeframes depends on the severity of cytopenias and clinical presentation. Results of bone marrow biopsies and ancillary investigations should be returned within two weeks. Specialised testing such as cytogenetics and molecular tests may take longer.

An inherited predisposition panel as part of the work-up may be appropriate in selected patients with MDS. This should be undertaken after appropriate counselling and discussion with a haematologist with experience in this area and/or a genetic counsellor.

Anyone diagnosed with cancer should have a detailed personal and family cancer history taken. Consult relevant guidelines to determine if referral to a familial cancer service is appropriate.

A familial cancer service assessment can determine if genetic testing is appropriate. Genetic testing is likely to be offered when there is at least a 10 per cent chance of finding a causative ‘gene error’ (pathogenic gene variant; previously called a mutation). Usually testing begins with a variant search in a person who has had cancer (a diagnostic genetic test). If a pathogenic gene variant is identified, variant-specific testing is available to relatives to see if they have or have not inherited the familial gene variant (predictive genetic testing).

Medicare funds some genetic tests via a Medicare Benefits Schedule (MBS) item number but most are not. Depending on the personal and family history, the relevant state health system may fund public sector genetic testing.

Pre-test counselling and informed consent is required before any genetic testing. In some states the treating team can offer ‘mainstream’ diagnostic genetic testing, after which referral is made to a familial cancer service if a pathogenic gene variant is identified. The familial cancer service can provide risk management advice, facilitate family risk notification and arrange predictive genetic testing for the family.

Visit the Centre for Genetics Education website for basic information about cancer in a family.

For detailed information and referral guidelines for MDS risk assessment and consideration of genetic testing, consult these resources:

Pharmacogenetics describes how individual genetic differences can lead to differences in the way certain medicines interact with the body. These interactions can affect the effectiveness of medications and any side effects. Applying pharmacogenetics to treatment planning may help patients to be prescribed the most appropriate treatment at the optimal dose from the beginning of treatment (NHMRC 2013).

Prognostic assessment, rather than staging, is a critical element in treatment planning and should be clearly documented in the patient’s medical record.
Prognosis and progression to AML can vary among patients depending on the risk of their disease (Bewersdorf et al. 2020; Sekeres & Cutler 2014; Volpe & Komoroji 2021). Due to the diversity of MDS subtypes, they are categorised as higher risk and lower risk. This is determined by prognostic systems based most commonly on blast percentage, cytogenetic risk groups and cytopenias but may also include age, performance status, transfusion needs and other clinical (and increasingly molecular) factors.

Commonly used prognostic scoring systems for MDS include:

  • the International Prognostic Scoring System (IPSS)
  • the Revised IPSS (IPSS-R) (Fenaux et al. 2021; Harris 2020; Sekeres & Cutler 2014).

Prognostic systems are evolving; please refer to the most current classification systems. In this document we define:

  • higher risk MDS as an IPSS score of intermediate (2 or higher), or an IPSS-R score of high/very high risk
  • lower risk MDS as low/intermediate (1 in IPSS and very low, low or intermediate in IPSS-R) (Volpe & Komoroji 2021).

Note that ‘intermediate’ on IPSS-R is sometimes considered to be higher risk and sometimes considered lower risk, depending on the patient’s individual circumstances.

As prognostic scoring systems evolve, it is likely that results of molecular testing will also be incorporated into such models.

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 scale or the Eastern Cooperative Oncology Group (ECOG) scale.

A number of factors should be considered at this stage:

  • the patient’s overall condition, life expectancy, personal preferences and decision-making capacity
  • discussing the multidisciplinary team approach to care with the patient
  • appropriate and timely referral to an MDM
  • pregnancy and fertility
  • support with travel and accommodation
  • teleconferencing or videoconferencing as required.

If indicated for the patient, the multidisciplinary team should meet to discuss newly diagnosed patients before definitive treatment so that a treatment plan can be recommended and there can be early preparation for the follow-up phase. The level of discussion may vary, depending on the patient’s clinical and supportive care factors. Some patients with non-complex cancers may not be discussed by a multidisciplinary team; instead, the team may have treatment plan protocols that will be applied if the patient’s case (cancer) meets the criteria. If patients are not discussed at an MDM,
they should at least be named on the agenda for noting. The proposed treatment must be recorded in the patient’s medical record and should be recorded in an MDM database where one exists.

Teams may agree on standard treatment protocols for non-complex care, facilitating patient review (by exception) and associated data capture.

Results of all relevant tests and access to images should be available for the MDM. Information about the patient’s concerns, preferences and social and cultural circumstances should also be available.

The multidisciplinary team requires administrative support in developing the agenda for the meeting, for collating patient information and to ensure appropriate expertise around the table to create an effective treatment plan for the patient. The MDM has a chair and multiple lead clinicians. Each patient case will be presented by a lead clinician (usually someone who has seen the patient before the MDM). In public hospital settings, the registrar or clinical fellow may take this role. A member of the team records the outcomes of the discussion and treatment plan in the patient history and ensures these details are communicated to the patient’s general practitioner. The team should consider the patient’s values, beliefs and cultural needs as appropriate to ensure the treatment plan is in line with these.

The multidisciplinary team should be composed of the core disciplines that are integral to providing good care. Team membership should reflect both clinical and supportive care aspects of care.

Pathology input is important.

See Appendix E for a list of team members who may be included in the multidisciplinary team for MDS.
Core members of the multidisciplinary team are expected to attend most MDMs either in person or remotely via virtual mechanisms. Additional expertise or specialist services may be required for some patients. An Aboriginal and Torres Strait Islander cultural expert should be considered, where feasible at clinical appointments, for all patients who identify as Aboriginal or Torres Strait Islander.

The general practitioner who made the referral is responsible for the patient until care is passed to another practitioner who is directly involved in planning the patient’s care.

The general practitioner may play a number of roles in all stages of the cancer pathway including diagnosis, referral, treatment, shared follow-up care, follow-up surveillance, coordination and continuity of care, as well as managing existing health issues and providing information and support to the patient, their family and carer.

A nominated contact person from the multidisciplinary team may be assigned responsibility for coordinating care in this phase. Care coordinators are responsible for ensuring there is continuity throughout the care process and coordination of all necessary care for a particular phase (COSA 2015). The care coordinator may change over the course of the pathway.

The lead clinician is responsible for overseeing the activity of the team and for implementing treatment within the multidisciplinary setting.

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

For more information visit:

Cancer prehabilitation uses a multidisciplinary approach combining exercise, nutrition and psychological strategies to prepare patients for the challenges of cancer treatment such as systemic therapy and radiation therapy. Team members may include anaesthetists, oncologists, surgeons, haematologists, clinical psychologists, exercise physiologists, physiotherapists and dietitians, among others.

Patient performance status is a central factor in cancer care and should be frequently assessed. All patients should be screened for malnutrition using a validated tool, such as the Malnutrition Screening Tool (MST). The lead clinician may refer obese or malnourished patients to a dietitian preoperatively or before other treatments begin.

Patients who currently smoke should be encouraged to stop smoking before receiving treatment. This should include an offer of referral to Quitline in addition to smoking cessation pharmacotherapy if clinically appropriate.

Evidence indicates that patients who respond well to prehabilitation may have fewer complications after treatment. For example, those who were exercising before diagnosis and patients who use prehabilitation before starting treatment may improve their physical or psychological outcomes,
or both, and this helps patients to function at a higher level throughout their cancer treatment (Cormie et al. 2017; Silver 2015).

For patients with MDS, the multidisciplinary team should consider these specific prehabilitation assessments and interventions for treatment-related complications or major side effects:

  • conducting a physical and psychological assessment to establish a baseline function level
  • identifying impairments and providing targeted interventions to improve the patient’s function level (Silver & Baima 2013)
  • reviewing the patient’s medication to ensure optimisation and to improve adherence to medicine used for comorbid conditions.

Following completion of primary cancer treatment, rehabilitation programs have considerable potential to enhance physical function.

Cancer and cancer treatment may cause fertility problems. This will depend on the age of the patient, the type of cancer and the treatment received. Infertility can range from difficulty having a child to the inability to have a child. Infertility after treatment may be temporary, lasting months to years, or permanent (AYA Cancer Fertility Preservation Guidance Working Group 2014).
Patients need to be advised about and potentially referred for discussion about fertility preservation before starting treatment and need advice about contraception before, during and after treatment. Patients and their family should be aware of the ongoing costs involved in optimising fertility. Fertility management may apply in both men and women. Fertility preservation options are different for men and women and the need for ongoing contraception applies to both men and women.

The potential for impaired fertility should be discussed and reinforced at different time points as appropriate throughout the diagnosis, treatment, surveillance and survivorship phases of care. These ongoing discussions will enable the patient and, if applicable, the family to make informed decisions.

All discussions should be documented in the patient’s medical record.

More information
See the Cancer Council website for more information.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with psychological and emotional distress while adjusting to the diagnosis; treatment phobias; existential concerns; stress; difficulties making treatment decisions; anxiety or depression or both; psychosexual issues such as potential loss of fertility and premature menopause; history of sexual abuse; and interpersonal problems
  • management of physical symptoms such as pain and fatigue (Australian Adult Cancer Pain Management Guideline Working Party 2019)
  • malnutrition or undernutrition, identified using a validated nutrition screening tool such as the MST (note that many patients with a high BMI [obese patients] may also be malnourished [WHO 2018])
  • support for families or carers who are distressed with the patient’s cancer diagnosis
  • support for families/relatives who may be distressed after learning of a genetically linked cancer diagnosis
  • specific spiritual needs that may benefit from the involvement of pastoral/spiritual care. Additionally, palliative care may be required at this stage.

For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

In discussion with the patient, the lead clinician should undertake the following:

  • establish if the patient has a regular or preferred general practitioner and if the patient does not have one, then encourage them to find one
  • provide written information appropriate to the health literacy of the patient about the diagnosis and treatment to the patient and carer and refer the patient to the Guide to best cancer care (consumer optimal care pathway) for MDS, as well as to relevant websites and support groups as appropriate such as the Leukaemia Foundation <https://www.leukaemia.org.au/MDS>
  • provide a treatment care plan including contact details for the treating team and information on when to call the hospital
  • discuss a timeframe for diagnosis and treatment with the patient and carer
  • discuss the benefits of multidisciplinary care and gain the patient’s consent before presenting their case at an MDM
  • provide brief advice and refer to Quitline (13 7848) for behavioural intervention if the patient currently smokes (or has recently quit), and prescribe smoking cessation pharmacotherapy, if clinically appropriate
  • recommend an ‘integrated approach’ throughout treatment regarding nutrition, exercise and minimal or no alcohol consumption among other considerations
  • communicate the benefits of continued engagement with primary care during treatment for managing comorbid disease, health promotion, care coordination and holistic care
  • where appropriate, review fertility needs with the patient and refer for specialist fertility management (including fertility preservation, contraception, management during pregnancy and of future pregnancies)
  • be open to and encourage discussion about the diagnosis, prognosis (if the patient wishes to know) and survivorship and palliative care while clarifying the patient’s preferences and needs, personal and cultural beliefs and expectations, and their ability to comprehend the communication
  • encourage the patient to participate in advance care planning including considering appointing one or more substitute decision-makers and completing an advance care directive to clearly document their treatment preferences. Each state and territory has different terminology and legislation surrounding advance care directives and substitute decision-makers.

The lead clinician has these communication responsibilities:

  • involving the general practitioner from the point of diagnosis
  • ensuring regular and timely communication with the general practitioner about the diagnosis, treatment plan and recommendations from MDMs and inviting them to participate in MDMs (consider using virtual mechanisms)
  • supporting the role of general practice both during and after treatment
  • discussing shared or team care arrangements with general practitioners or regional cancer specialists, or both, together with the patient.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Step 4 describes the optimal treatments for MDS, the training and experience required of the treating clinicians and the health service characteristics required for optimal cancer care.

All health services must have clinical governance systems that meet the following integral requirements:

  • identifying safety and quality measures
  • monitoring and reporting on performance and outcomes
  • identifying areas for improvement in safety and quality (ACSQHC 2020).

Step 4 outlines the treatment options for MDS. For detailed clinical information on treatment options refer to the National Comprehensive Cancer Network MDS guideline.

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
  • supportive therapies to improve quality of life and/or longevity
  • 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).

Treatment options for MDS patients will depend on patient factors (age, comorbidities, patient wishes) as well as disease factors (risk scores, cytopenias, symptoms).

All patients will receive best practice medical supportive care including education, active surveillance and monitoring, transfusions as appropriate and prompt infection control. There may be some lower risk MDS patients who are not on any active interventions who may be suitable for monitoring and surveillance with their general practitioner.

The range of disease-specific/directed additional treatment options varies across different risk groups depending on age and comorbidities. Options include:

  • supportive interventions such as GCSF or EPO in some patients
  • transfusion support
  • chemotherapy – low dose or more intensive
  • haemopoietic stem cell transplant
  • clinical trials
  • other specific agents depending on the patient’s clinical presentation or karyotype

The funding status of various treatment approaches is dynamic. Prescribers should ensure familiarity with eligibility criteria and discuss any financial implications of all treatment recommendations with patients before starting treatment.

Supportive therapies are required in all MDS patients and may be the only long-term treatment required for those with lower risk disease, or for older or unfit patients and those who have not responded to other treatments (Fenaux et al. 2021).

Supportive therapy may include the following:

  • Conduct regular blood tests and review appointments with the patient’s general practitioner and specialist to monitor progress and symptoms.
  • Manage anaemia, including red blood cell transfusions – frequency will be determined by symptoms and comorbidities.
  • Manage bleeding, which may include platelet transfusions or tranexamic acid when
  • Manage infections – prompt antibiotics for infection and consideration of short-term use of growth factors (e.g. GCSF). Infectious disease consultation may be required if infections recur. Anti-fungal prophylaxis may be considered in patients with persistent severe neutropenia depending on local guidelines and practice.
  • Consider iron chelation therapy for transfusional iron overload. In general, this is considered for patients with significant transfusion burden and evidence for iron overload. Both oral and

Parenteral chelation therapy options are available and could be tailored to the patient depending on clinical need.

  • Manage gastrointestinal symptoms such as nausea, vomiting, loss of appetite, dysgeusia, diarrhoea or constipation as a result of treatment. This requires optimal symptom control with medicine, nutritional advice, analgesia and mouth care (referral to a dietitian may be required if dietary intake is affected).

Timeframe for starting treatment

The timeframe for starting treatment should be guided by clinical presentation and urgency and disease progression over time.

Training and experience required of the physician

Documented evidence of the physician’s training and experience, including their specific (sub-specialty) experience with MDS and procedures to be undertaken, should be available.

Health service characteristics

To provide safe and quality care for patients, health services should have these features:

  • medical staff availability
  • diagnostic imaging

In patients with lower risk MDS, anaemia is the most common cytopenia. Erythropoiesis-stimulating agents may be used as first-line therapy.

Available treatment options include (Stojkov et al. 2020; Volpe & Komoroji 2021):

  • lenalidomide – specifically approved for patients with transfusion-dependent lower risk MDS with del(5q) abnormality in their karyotype analysis
  • hypomethylating agents (HMAs) including azacitidine in patients who progress to higher risk MDS
  • immunosuppressive therapy to provide some haematological response among selected subsets of patients.

Timeframe for starting treatment

The timeframe for starting treatment should be guided by clinical presentation and urgency.

Training and experience required of the physician

Documented evidence of the physician’s training and experience (e.g. Fellow of the Royal Australian College of Physicians or equivalent) with adequate training and experience that enables institutional credentialing and agreed scope of practice in haematology.

Health service characteristics

To provide safe and quality care for patients having treatments, health services should have these features:

  • critical care support
  • 24-hour medical staff availability
  • 24-hour high dependence or intensive care unit
  • diagnostic imaging
  • pathology diagnostics
  • ready access to blood banking and transfusion

Survival for these patients is generally poor, so if appropriate for the disease, directed therapy treatment should be initiated promptly.

Standard therapies include (Bewersdorf et al. 2020; Sekeres & Cutler 2014) the following:

  • hypomethylating agents (HMAs azacitidine and decitabine). Azacitidine has shown a survival benefit in patients with higher risk MDS and is the mainstay of therapy, with clinical benefit and haematological responses seen even in those who don’t achieve a complete remission. Treatment is usually continued for at least 6 months and continued based on response, though dose reductions or delays may be required in some patients.
  • AML induction This can be considered in those with a high blast count and who are eligible for intensive therapy.
  • Haematopoietic stem cell transplantation close to the time of diagnosis, depending on the patient’s goals of Consider proceeding to transplantation soon after an optimal donor is located.
  • In the interim period before transplantation, HMA therapy, AML induction chemotherapy or enrolment in a clinical trial should be considered to prevent disease progression, although the optimal pre-transplantation therapy is unknown.

Timeframe for starting treatment

For symptomatic patients with higher risk disease, a decision about disease-specific therapy should be made and treatment begun within the first six weeks of initial specialist consultation. At times, depending on disease stability and symptoms, ongoing close monitoring could be considered depending on the patient’s circumstances.

Training and experience required of the physician

Documented evidence of the physician’s training and experience (e.g. Fellow of the Royal Australian College of Physicians or equivalent) with adequate training and experience that enables institutional credentialing and agreed scope of practice in haematology.

To oversee higher risk MDS patient care, the physician should have worked or be working in a team with experience in managing MDS and AML, and specifically the use of HMAs or intensive chemotherapy.

Documented evidence of the physician training and experience, including their specific (sub-specialty) experience with MDS and procedures to be undertaken, should be available.

Cancer nurses should have accredited training 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 adequate training in systemic therapy medication, including dosing calculations according to protocols, formulations and/or preparation.

In a setting where no haematologist or 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.

Health service characteristics

To provide safe and quality care for patients having systemic therapy for higher risk MDS, health services should have these features:

  • critical care support
  • 24-hour medical staff availability
  • 24-hour high dependence or intensive care unit
  • diagnostic imaging
  • pathology diagnostics
  • ready access to blood banking and transfusion

Allogeneic stem cell transplantation is the only potentially curative treatment of MDS (Bewersdorf et al. 2020; Skeres & Cutler 2014). In this procedure, the patient receives blood-forming cells (stem cells) from a healthy donor (related or unrelated) to replace their own stem cells following chemotherapy and, in some cases, radiation.

Patients may have additional supportive care requirements to address the immunosuppressive effects and long-term side effects of stem cell transplantation. Issues may include infertility, GVHD, increased risk of infection, iron overload or anaemia, bleeding, mouth ulcers and fatigue.

Timeframe for starting treatment

A referral to a bone marrow transplant specialist should occur once transplantation is considered a potential treatment option for a patient with higher risk MDS and occasionally lower risk MDS.

Early referral to a transplant specialist is recommended for patients under 70 years of age and with higher risk MDS. Age-specific frailty scores and performance status should be considered for such a referral rather than an absolute age cut-off.

Training and experience required of the physician

Documented evidence of the physician’s training and experience (e.g. Fellow of the Royal Australian College of Physicians or equivalent) with adequate training and experience that enables institutional credentialing and agreed scope of practice in bone marrow transplantation.

Documented evidence of the physician’s training and experience, including their specific (sub- specialty) experience with MDS and procedures to be undertaken, should be available.

Health service characteristics

To provide safe and quality care for patients having haematopoietic stem cell transplant, health services should have these features:

  • critical care support
  • 24-hour medical staff availability including access to consultative medical subspeciality services
  • 24-hour operating room access, high dependency unit and intensive care unit
  • bone marrow transplantation unit with ancillary medical and allied health support
  • diagnostic imaging
  • pathology diagnostics
  • ready access to blood banking and transfusion

Combinations of hypomethylating agents (HMAs, especially with immune checkpoint inhibitors, have shown promising signals in both the frontline and HMA-refractory setting.

Several other novel agents including orally available and longer acting HMAs, the BCL-2 inhibitor venetoclax, oral agents targeting driver mutations (IDH1 and IDH2, FLT3), immunotherapies and new options for intensive chemotherapy are being studied in clinical trials (Bewersdorf et al. 2020). Examples of non-chemotherapy approaches include therapy targeting marrow microenvironment and immune checkpoints such as TIM-3 and antiCD47 monoclonal antibody-magrolimab.

Examples of new treatments for adults with MDS, approved by the America’s Food and Drug Administration, include luspatercept (Reblozyl) for lower risk MDS and the oral combination of decitabine and cedazuridine (Inqovi) for higher risk MDS (Harris 2020).

Clinical trials for MDS may be available, especially in those with higher risk disease, and they may also be eligible for AML trials. Refer to section 4.4 for clinical trial resources.

The key principle for precision medicine is prompt and clinically oriented communication and coordination with an accredited laboratory and pathologist. Tissue analysis is integral for access to emerging therapies and, as such, tissue specimens should be treated carefully to enable additional histopathological or molecular diagnostic tests in certain scenarios.

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.

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). This is particularly true for cancers with poor prognosis.

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 relapsed or progressive disease.

More information

These online resources are useful:

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with emotional and psychological issues, including body image concerns, fatigue, neuropathy, sleep changes, quitting smoking, traumatic experiences, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns
  • potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
  • management of physical symptoms such as bruising or bleeding and recurrent infections
  • decline in mobility or functional status as a result of disease progression
  • assistance with beginning or resuming regular exercise with referral to an exercise physiologist or physiotherapist (COSA 2018; Hayes et al. 2019).

Early involvement of general practitioners may lead to improved cancer survivorship care following acute treatment. General practitioners can address many supportive care needs through good communication and clear guidance from the specialist team (Emery 2014).

Patients, carers and families may have these additional issues and needs:

  • financial issues related to loss of income (through reduced capacity to work or loss of work) and additional expenses as a result of illness or treatment
  • advance care planning, which may involve appointing a substitute decision-maker and completing an advance care directive
  • legal issues (completing a will, care of dependent children) or making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Cancer Council’s 13 11 20 and the Leukaemia Foundation’s 1800 620 420 information and support line can assist with information and referral to local support services.

For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

Rehabilitation may be required at any point of the care pathway. If it is required before treatment, it is referred to as prehabilitation (see section 3.6.1).

All members of the multidisciplinary team have an important role in promoting rehabilitation. Team members may include occupational therapists, speech pathologists, dietitians, social workers, psychologists, physiotherapists, exercise physiologists and rehabilitation specialists.

To maximise the safety and therapeutic effect of exercise for people with cancer, all team members should recommend that people with cancer work towards achieving, and then maintaining, recommended levels of exercise and physical activity as per relevant guidelines. Exercise should be prescribed and delivered under the direction of an accredited exercise physiologist or physiotherapist with experience in cancer care (Vardy et al. 2019). The focus of intervention from these health professionals is tailoring evidence-based exercise recommendations to the individual patient’s needs and abilities, with a focus on the patient transitioning to ongoing self-managed exercise.

Other issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, achieving independence in daily tasks, optimising nutritional intake, returning to work and ongoing adjustment to cancer and its consequences. Referrals to dietitians, psychosocial support, return-to-work programs and community support organisations can help in managing these issues.

The lead or nominated clinician should take responsibility for these tasks:

  • discussing treatment options with patients and carers, including the treatment intent and expected outcomes, and providing a written version of the plan and any referrals
  • providing patients and carers with information about the possible side effects of treatment, managing symptoms between active treatments, how to access care, self-management strategies and emergency contacts
  • encouraging patients to use question prompt lists and audio recordings, and to have a support person present to aid informed decision making
  • initiating a discussion about advance care planning and involving carers or family if the patient

The general practitioner plays an important role in coordinating care for patients, including helping to manage side effects and other comorbidities, and offering support when patients have questions or worries. For most patients, simultaneous care provided by their general practitioner is very important.

The lead clinician, in discussion with the patient’s general practitioner, should consider these points:

  • the general practitioner’s role in symptom management, supportive care and referral to local services
  • using a chronic disease management plan and mental health care management plan
  • how to ensure regular and timely two-way communication about:
    • the treatment plan, including intent and potential side effects
    • supportive and palliative care requirements
    • the patient’s prognosis and their understanding of this
    • enrolment in research or clinical trials
    • changes in treatment or medications
    • the presence of an advance care directive or appointment of a substitute decision-maker
    • recommendations from the multidisciplinary

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Survivors generally need regular, ongoing, long-term follow-up because treatments for MDS are generally not curative. The survivorship care plan therefore may need to be updated to reflect changes in the patient’s clinical status and psychosocial needs.

The term ‘cancer survivor’ describes a person living with cancer, from the point of diagnosis until the end of life. Survivorship care in Australia has traditionally been provided to patients who have completed active treatment and are in the follow-up phase. But there is now a shift to provide survivorship care and services from the point of diagnosis to improve cancer- related outcomes.

Cancer survivors may experience inferior quality of life and cancer-related symptoms for up to five years after their diagnosis (Jefford et al. 2017). Distress, fear of cancer recurrence, fatigue, obesity and sedentary lifestyle are common symptoms reported by cancer survivors (Vardy et al. 2019).

Due to an ageing population and improvements in treatments and supportive care, the number of people surviving cancer is increasing. International research shows there is an important need

to focus on helping cancer survivors cope with life beyond their acute treatment. Cancer survivors often face issues that are different from those experienced during active treatment for cancer and may include a range issues, as well as unmet needs that affect their quality of life (Lisy et al. 2019; Tan et al. 2019).

Physical, emotional and psychological issues include fear of cancer recurrence, cancer-related fatigue, pain, distress, anxiety, depression, cognitive changes and sleep issues (Lisy et al. 2019). Late effects may occur months or years later and depend on the type of cancer treatment. Survivors and their carers may experience impacted relationships and practical issues including difficulties with return to work or study and financial hardship. They may also experience changes to sex and intimacy. Fertility, contraception and pregnancy care after treatment may require specialist input.

The Institute of Medicine, in its report From cancer patient to cancer survivor: Lost in transition, describes the essential components of survivorship care listed in the paragraph above, including interventions and surveillance mechanisms to manage the issues a cancer survivor may face

(Hewitt et al. 2006). Access to a range of health professions may be required including physiotherapy, occupational therapy, social work, dietetics, clinical psychology, fertility and palliative care.

Coordinating care between all providers is essential to ensure the patient’s needs are met.

Cancer survivors are more likely than the general population to have and/or develop comorbidities (Vijayvergia & Denlinger 2015). Health professionals should support survivors to self-manage their own health needs and to make informed decisions about lifestyle behaviours that promote wellness and improve their quality of life (Australian Cancer Survivorship Centre 2010; Cancer Australia 2017; NCSI 2015).

The transition from active treatment to follow-up care is critical to long-term health. In MDS, this transition is clearer for patients who received time-limited therapy.

For patients who received continuous and ongoing therapies, the transitions can be indistinct,

but these principles may still apply once disease is well controlled and a stable treatment program is established. 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. This will vary depending on the type and stage of cancer and needs to be planned.

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 regarding format, frequency and triggers for communication.

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 or a chronic disease management 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
  • disease 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
  • follow-up schedule
  • contact information for key healthcare

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 follow-up 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 follow-up care can be safely added such as nurse-led models (Monterosso et al. 2019). Other models of follow-up 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 professionals 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 or chronic disease management 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 follow-up 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 relapsed or progressive

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

Care in the initial follow-up phase is driven by predicted risks (e.g. the risk of relapse or progression, developing late effects of treatment and psychological issues) as well as individual clinical and supportive care needs. It is important that follow-up 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. 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
  • org.au
  • South Australian Cancer Service – Statewide Survivorship Framework resources
  • American Society of Clinical Oncology –

Not smoking, eating a healthy diet, being sun smart, avoiding or limiting alcohol intake, being physically active and maintaining a healthy body weight may help reduce the risk of progression or a second primary cancer.

Encourage and support all cancer survivors to reduce modifiable risk factors for other cancers and chronic diseases. Ongoing coordination of care between providers should also deal with any comorbidities, particularly ongoing complex and life-threatening comorbid conditions.

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:

See validated screening tools mentioned in Principle 4 ‘Supportive care’. Additionally, the ‘Cancer Survivors Unmet Needs (CaSun)’ is another validated screening tool that may help health professionals to identify the unmet needs of patients during survivorship.

A number of specific challenges and needs may arise for cancer survivors:

  • financial and employment issues (e.g. loss of income and assistance with returning to work, and the cost of treatment, travel and accommodation)
  • appointing a substitute decision-maker and completing an advance care directive
  • legal issues such as completing a

For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

Rehabilitation may be required at any point of the care pathway from the pre-treatment phase through to disease-free survival and palliative care (Cormie et al. 2017).

Issues that may need to be dealt with include managing cancer-related fatigue, coping with cognitive changes, improving physical endurance, achieving independence in daily tasks, returning to study

or work and ongoing adjustment to cancer and its consequences.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

Cancer survivors may find referral to specific cancer rehabilitation, optimisation programs or community-based rehabilitation appropriate and beneficial. Other options include referral to allied health supports through team care arrangements and mental health plans. Some community support organisations (cancer-related non-government, not-for-profit and charities) provide services to cancer survivors.

The lead clinician (themselves or by delegation) should take responsibility for these tasks:

  • explaining the model of follow-up care and the roles of health professionals involved in follow-up care including the role of general practice
  • explaining the treatment summary and follow-up care plan
  • discussing the development of a shared follow-up and survivorship care plan where a model of shared follow-up care has been agreed
  • discussing how to manage any of the physical, psychological or emotional issues identified
  • providing information on the signs and symptoms of relapsed disease or progression
  • providing a survivorship care plan with information on secondary prevention and healthy living
  • providing contact details of the care team involved
  • providing clear information about the role and benefits of palliative care and advance care

The lead clinician should ensure regular, timely, two-way communication with the general practitioner about:

  • the patient’s progress
  • the follow-up care plan
  • potential late effects
  • supportive and palliative care requirements
  • any shared care arrangements
  • clarification of various roles in patient care
  • a process for rapid re-entry to medical services for patients with suspected recurrence or if there are other concerns.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.


Patients who present with relapsed or progressive MDS should be managed by a multidisciplinary team and offered timely referral to appropriate physical, practical and emotional support, including palliative care. Where progression to AML has occurred, specific therapy directed to AML may be considered if clinically appropriate for that person.

Step 6 is concerned with managing relapsed or progressive disease. The likelihood of relapse or progressive disease depends on many factors usually related to the type of cancer, the stage of cancer at presentation and the effectiveness of treatment. Some cancers cannot be eradicated even with the best initial treatment. But controlling disease and disease-related symptoms is often possible, depending on the clinical situation.

Refer to the Optimal care pathway for people with acute myeloid leukaemia 

Some patients will have relapsed or progressive disease on initial presentation. Others may present with symptoms of refractory or progressive disease after a previous cancer diagnosis. 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 progressive disease.

Signs and symptoms will depend on the type of cancer initially diagnosed. They may be discovered by the patient or by surveillance in the follow-up care period. Symptoms can often present as:

  • progressive cytopenias and presence of or increasing blasts on the blood film
  • progressive fatigue
  • bleeding and bruising
  • recurrent infections
  • increasing transfusion

MDS is generally considered incurable, other than for those who have a successful allogeneic stem cell transplant. Many patients who relapse after initial therapy have worsening symptoms or transfusion dependence and/or progress to AML.

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 care should be considered and offered at an early stage. Many people live with advanced cancer for many months or years. As survival is improving in many patients, 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 and 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 become refractory or progressed, care should be provided under the guidance of a treating specialist. Each patient should be evaluated to determine if referral to the original multidisciplinary team is necessary. Often referral back to the original multidisciplinary team will not be necessary unless there are obvious aspects of care involving different therapeutic and supportive care disciplines not otherwise accessible. The multidisciplinary team may include new members such as palliative care specialists.

Treatment will depend on the, extent of relapsed or progressive disease, previous management and the patient’s preferences.

In managing people with relapsed or progressive MDS, treatment may include these options:

  • clinical trials
  • treatment for AML if there is progression to AML, if clinically appropriate
  • supportive medical management
  • palliative

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 relapsed or progressive 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.

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.

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:

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise at this time for patients:

  • assistance for dealing with emotional and psychological distress resulting from fear of death or dying, existential concerns, anticipatory grief, communicating wishes to loved ones, interpersonal problems and sexuality concerns
  • potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
  • cognitive changes memory, attention and concentration (a patient may appoint someone to make medical, financial and legal decisions on their behalf – a substitute decision-maker – before and in case they experience cognitive decline)
  • management of physical symptoms including fatigue, bruising or bleeding, and recurrent infections
  • management of gastrointestinal symptoms such as nausea, vomiting, loss of appetite, dysgeusia, diarrhoea or constipation as a result of treatment, which requires optimal symptom control with medicine, nutritional advice, analgesia and mouth care (referral to a dietitian may be required if dietary intake is affected)
  • decline in mobility or functional status as a result of progressive or refractory disease and treatments (referral to physiotherapy or occupational therapy may be required)
  • coping with hair loss and changes in physical appearance (refer to the Look Good, Feel Better program – see ‘Resource list’)
  • appointing a substitute decision-maker and completing an advance care directive
  • financial issues as a result of disease recurrence such as gaining early access to superannuation and insurance
  • legal issues (completing a will, care of dependent children) and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Rehabilitation may be required at any point of the refractory or progressive disease care pathway, from preparing for treatment through to palliative care. Issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to cancer and its consequences.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

The lead clinician should ensure there is adequate discussion with patients and carers about the diagnosis and recommended treatment, including treatment intent and possible outcomes, likely adverse effects and the supportive care options available.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Step 7 is concerned with maintaining the patient’s quality of life and meeting their health and supportive care needs as they approach the end of life, as well as the needs of their family and carers.

Some patients with advanced cancer will reach a time when active treatment is no longer appropriate. The team needs to share the principles of a palliative approach to care when making decisions with the patient and their family or carer. End-of-life care is appropriate when the patient’s symptoms are increasing and functional status is declining.

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:

or to Advance Care Planning Australia’s National Advisory Service on 1300 208 582

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:

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with emotional and psychological distress from anticipatory grief, fear of death or dying, anxiety/depression and interpersonal problems
  • management of physical symptoms including fatigue, sleep changes and shortness of breath
  • decline in mobility or functional status affecting the patient’s discharge destination (a referral to physiotherapy, exercise physiology, occupational therapy or social work may be needed)
  • appointing a substitute decision-maker and completing an advance care directive
  • legal issues (completing a will, care of dependent children) and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability
  • specific support for families where a parent is dying and will leave behind bereaved children or adolescents, creating special family needs
  • arranging a funeral

These services and resources can help with:

  • referral to 13 11 20 for Cancer Council Australia’s Pro Bono Program for free legal, financial, small business accounting and workplace assistance (subject to a means test)
  • Sad news sorry business (Queensland Health 2015) for the specific needs of Aboriginal and Torres Strait Islander people.

For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

The lead clinician is responsible for:

  • being open to and encouraging discussion with the patient about the expected disease course, considering the patient’s personal and cultural beliefs and expectations
  • discussing palliative care options, including inpatient and community-based services as well as dying at home and subsequent arrangements
  • providing the patient and carer with the contact details of a palliative care service
  • referring the patient to palliative care in the community according to the carer’s

The lead clinician should discuss end-of-life care planning to ensure the patient’s needs and goals are met in the appropriate environment. The patient’s general practitioner should be kept fully informed and involved in major developments in the patient’s illness path.

More information

For support with communication skills and training programs, see these sources:

The burden of cancer is not evenly spread across Australia. People experiencing socioeconomic disadvantage, Aboriginal and Torres Strait Islander communities, culturally diverse communities, people living with a disability, people with chronic mental health or psychiatric concerns and those who live in regional and rural areas of Australia have poorer cancer outcomes.

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 <www.caresearch.com.au/tel/tabid/4881/Default.aspx>.

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 (Ferrari et al. 2010; Smith et al. 2013). 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 78 48) 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

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.

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.

Cancer Australia

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

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:

CanEAT pathway

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

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.

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.

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.

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.

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.

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.

Cancer Council Australia

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

CanEAT pathway

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

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.

advance care directive – voluntary person-led document that focus on an individual’s values and preferences for future health and medical treatment decisions, preferred outcomes and care. They are completed and signed by a competent person. They are recognised by specific legislation (statutory) or common law (non-statutory). Advance care directives can also appoint the substitute decision-maker(s) who can make decisions about health or personal care on the individual’s behalf if they are no longer able to make decisions themselves.

Advance care directives focus on the future health care of a person, not on the management of his or her assets. They come into effect when an individual loses decision-making capacity.

advance care planning – the process of planning for future health and personal

care, where the person’s values, beliefs and preferences are made known so they can guide decision making at a future time when that person cannot make or communicate their decisions.

alternative therapies – treatments used in place of conventional medical treatment.

care coordinator – the health provider nominated by the multidisciplinary team to coordinate patient care. The care coordinator may change over time depending on the patient’s stage in the care pathway and the location and care in which care is being delivered.

complementary therapies – supportive treatment used in conjunction with conventional medical treatment. These treatments may improve wellbeing and quality of life and help people deal with the side effects of cancer.

end-of-life care – includes physical, spiritual and psychosocial assessment, and care and treatment, delivered by health professionals and ancillary staff. It also includes support of families and carers and care of the patient’s body after their death.

genomics – the study of multiple genes and their relationships with one another.

immunotherapy – a type of cancer treatment that helps the body’s immune system to fight cancer. Immunotherapy can boost the immune system to work better against cancer or remove barriers to the immune system attacking the cancer.

indicator – a documentable or measurable piece of information regarding a recommendation in the optimal care pathway.

informed financial consent – the provision of cost information to patients, including notification of likely out-of-pocket expenses (gaps), by all relevant service providers, preferably in writing, before admission to hospital or treatment (Australian Government Department of Health 2017).

lead clinician – the clinician who is nominated as being responsible for individual patient care. The lead clinician may change over time depending on the stage of the care pathway and where care is being provided.

minimal residual disease (MRD) – a small number of cancer cells left in the body after treatment.

multidisciplinary care – an integrated team approach to health care in which medical and allied health providers consider all relevant treatment options and collaboratively develop an individual treatment plan for each patient.

multidisciplinary team – comprises the core disciplines that are integral to providing good care. The team is flexible in approach, reflects the patient’s clinical and psychosocial needs and has processes to facilitate good communication.

multidisciplinary team meeting – a meeting of health professionals from one or more clinical disciplines who together make decisions about recommended treatment of patients.

optimal care pathway – the key principles and practices required at each stage of the care pathway to guide the delivery of consistent, safe, high-quality and evidence-based care for all people affected by cancer.

performance status – an objective measure of how well a patient can carry out activities of daily life.

primary care health professional – in most cases this is a general practitioner but may also include general practice nurses, community nurses, nurse practitioners, allied health professionals, midwives, pharmacists, dentists and Aboriginal health workers.

prognostic assessment – evaluation of clinical features (e.g. pathological,

biochemical, molecular, genetic, simple clinical measurements) to predict a patient’s likelihood of responding to treatment, developing disease or experiencing a medical event.

relative survival rate – the probability of being alive for a given amount of time after diagnosis compared with the general population.

risk stratification – a systematic process to target and identify select patients who are at risk of poorer health outcomes, and who are expected to benefit most from a particular intervention or interventions.

spiritual care – the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.

substitute decision-maker – a person permitted under the law to make decisions on behalf of someone who does not have competence or capacity.

supportive care – care and support that aims to improve the quality of life of people living with cancer, cancer survivors and their family and carers and particular forms of care that supplement clinical treatment modalities.

survivorship – an individual is considered a cancer survivor from the time of diagnosis, and throughout their life; the term includes individuals receiving initial or maintenance treatment, in recovery or in the post-treatment phase.

survivorship care plan – a formal, written document that provides details of a person’s cancer diagnosis and treatment, potential late and long-term effects arising from the cancer and its treatment, recommended follow-up, surveillance, and strategies to remain well.

targeted therapy – a medicine that blocks the growth and spread of cancer by interfering with specific molecules.

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: 978-0-6453299-1-9

Leukaemia Foundation and Australian Government Department of Health 2021, Optimal care pathway for people with myelodysplastic syndromes, 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.

Associate Professor Anoop Enjeti (Chair), Haematologist, NSW Health Pathology John Hunter Hospital, Senior Staff Haematologist, Calvary Mater Hospital, Conjoint Associate Professor University of Newcastle

Dr Sharon Avery, Haematologist, Cairns and Hinterland Hospital and Health Service

Jenni Bourke, Occupational Therapist, Blood Cancer Support Coordinator, Leukaemia Foundation

Professor David Curtis, Haematologist and Bone Marrow Transplant Physician, Alfred Health and Australian Centre For Blood Diseases, Monash University

Rebecca Dring, Clinical Nurse Consultant, Royal Melbourne Hospital and Peter MacCallum Cancer Centre

Dr Carolyn Ee, General Practitioner, Western Sydney University, Primary Care Collaborative Cancer Clinical Trials Group

Dr Sally Greenaway, Haematologist, Westmead Hospital

Dr Yasmin Harvey, Haematologist, Sullivan Nicolaides Pathology

Christine Heath, Consumer Representative

Dr Devendra Hiwase, Haematologist,

Royal Adelaide Hospital, Associate Professor University of Adelaide

Associate Professor Melita Kenealy, Haematologist, Cabrini Hospital and Adjunct Associate Professor (Clinical), Monash University

Julie Tovey, Blood Cancer Support Coordinator, Registered Nurse, Leukaemia Foundation

Dr Nienke Zomerdijk, Research Fellow Psycho- Oncology, University of Melbourne and Victorian Comprehensive Cancer Centre Alliance

Dr Duncan Purtill, Haematologist and Bone Marrow Transplant Physician Consultant, Fiona Stanley Hospital and Pathwest Laboratory Medicine

Dr Robin Gasiorowski, Haematologist, Concord Hospital, Macquarie University Hospital, University of Sydney, Macquarie University

Professor Paula Marlton, Haematologist, Princess Alexandra Hospital

Professor John Pimanda, Haematologist, Prince of Wales Hospital and Lowy Cancer Research Centre, UNSW Sydney

Professor David Ritchie, Haematologist, Bone Marrow Transplant Specialist, Peter MacCallum Cancer Centre and Royal Melbourne Hospital

Associate Professor William Stevenson, Haematologist, Royal North Shore Hospital

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 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, Haematologist, NSW Health Pathology – 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,

The 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.

Not all patients with MDS require ongoing input from a multidisciplinary team. Where required, the multidisciplinary team may include the following members:

  • care coordinator (as determined by multidisciplinary team members)*
  • haematologist*
  • infectious diseases physician*
  • nurse (with appropriate expertise or under the supervision of nurses with appropriate expertise)*
  • pathologist including pathologist with molecular genetic expertise*
  • pharmacist*
  • Aboriginal health practitioner, Indigenous liaison officer or remote general practitioner
  • fertility specialist
  • spiritual/pastoral care
  • clinical trials coordinator
  • dentist
  • dietitian
  • exercise physiologist
  • general practitioner
  • genetic counsellor
  • geriatrician
  • nuclear medicine physician
  • occupational therapist
  • palliative care specialist
  • physiotherapist
  • psychiatrist
  • psychologist
  • radiation oncologist
  • radiologist/imaging specialists
  • social worker
  • spiritual/pastoral

* Denotes core members. Core members of the multidisciplinary team are expected to attend most multidisciplinary team meetings either in person or remotely.

Aplastic Anemia & MDS International Foundation n.d., ‘Treating higher-risk myelodysplastic syndromes’, viewed 27 August 2021,
<https://www.aamds.org/interview/treating-higher-risk-myelodysplastic-syndromes>.

Australian Adult Cancer Pain Management Guideline Working Party 2019, ‘Australian adult cancer pain management guideline: ‘Cancer pain management in adults’, Cancer Council Australia, Sydney, viewed 6 June 2019,
<https://wiki.cancer.org.au/australiawiki/index.php?oldid=191646>.

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<https://www.cancer.org/cancer/myelodysplastic-syndrome/treating/general-approach.html>.

Australian Cancer Survivorship Centre 2010, ‘Survivorship care planning’, viewed 27 November 2013,
<http://122.102.106.143/cancersurvivorship/Home>.

Australian Cancer Survivorship Centre 2019, ‘Community support organisations’ cancer survivorship care consensus statement’, viewed 10 February 2020,
<https://www.petermac.org/sites/default/files/media-uploads/NGO_ConsensusStatement.pdf>.

Australian Clinical Trials 2015, ‘Potential benefits and risks’, National Health and Medical Research Council, Department of Industry, Innovation and Science, Australian Government, Canberra, viewed 24 July 2019,
<https://www.australianclinicaltrials.gov.au/why-be-part-clinical-trial/potential-benefits-and-potential-risks>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2014, ‘Health literacy: taking action to improve safety and quality’, ACSQHC, Sydney, viewed 18 February 2020,
<https://www.safetyandquality.gov.au/sites/default/files/migrated/Health-Literacy-Taking-action-to-improve-safety-and-quality.pdf>.

Australian Commission for Safety and Quality in Health Care (ACSQHC) 2015, ‘Credentialing health practitioners and defining their scope of clinical practice: a guide for managers and practitioners’, ACSQHC, Sydney, viewed 18 February 2020, <https://www.safetyandquality.gov.au/publications-and-resources/resource-library/credentialing-health-practitioners-and-defining-their-scope-clinical-practice-guide-managers-and-practitioners>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2017, ‘National Safety and Quality Health Service Standards guide for hospitals’, ACSQHC, Sydney, viewed 18 February 2020,
<https://www.safetyandquality.gov.au/wp-content/uploads/2017/12/National-Safety-and-Quality-Health-Service-Standards-Guide-for-Hospitals.pdf>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2019a, Person-centred care, ACSQHC, Sydney, viewed 15 May 2020,
<https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2019b, ‘Australian Hospital Patient Experience Question Set’, ACSQHC, Sydney, viewed 25 March 2020,
<https://www.safetyandquality.gov.au/our-work/indicators-measurement-and-reporting/australian-hospital-patient-experience-question-set>.

Australian Commission for Safety and Quality in Health Care (ACSQHC) 2020, ‘NSQHS Standards user guide for medication management in cancer care’, ACSQHC, Sydney, viewed 16 April 2020,
<https://www.safetyandquality.gov.au/publications-and-resources/resource-library/nsqhs-standards-user-guide-medication-management-cancer-care>.

Australian Government Department of Health 2017, ‘Out-of-pocket expenses for private medical treatment (informed financial consent)’, Commonwealth of Australia, Canberra.