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

The risk factors for developing Hodgkin lymphoma and DLBCL include:

• age – all ages can develop these lymphomas; however, DLBCL is most common in middle-aged to older adults, while Hodgkin lymphoma is common in adolescents and young adults as well as older adults
• intrinsic immunosuppression – patients who have received an organ transplant, are HIV-positive or are being therapeutically treated with immunosuppressants
• viral infection with Epstein-Barr virus in conjunction with immune deficiency
• family history of lymphoproliferative disorder.

Risk factors specific to DLBCL are:

• gender – males have a slightly higher risk
• a high BMI
• B-cell-activating autoimmune diseases (Cerhan et al. 2014)
• prolonged hair dye use (Parodi et al. 2016)
• obesity (Bhaskaran et al. 2014)
• personal or family history of a lymphoproliferative disorder.

Everyone should be encouraged to reduce their modifiable risk factors, including preventing and/or reducing obesity.

The following symptoms are common:

• any abnormal lump or mass in any organ
• lymphadenopathy:
  • persistent beyond two weeks
  • associated with systemic symptoms (see next bullet point)
  • that does not resolve despite appropriate treatment of infection
  • associated with pain in the lymph nodes following alcohol consumption
• one or more of these symptoms even in the absence of lymphadenopathy:
  • persistent unexplained fever
  • drenching sweats
  • unintentional weight loss
  • persistent severe itch
  • frequent infections.

Hodgkin lymphoma and DLBCL can present with many symptoms, and this possibility should be kept in mind during the evaluation of otherwise unexplained symptoms.

Any symptoms of acute organ compromise (compression, spinal cord, ureter, arteries, airways) require prompt attention.

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

Patients suspected to have lymphoma based on the clinical assessment during the initial general practitioner visit should be immediately referred to a specialist for diagnosis.

For patients where there is less of an immediate concern, or a lower index of suspicion, further examinations/investigations by the general practitioner should include (but is not limited to):

• blood tests to assess organ dysfunction, such as a full blood examination with film and sometimes flow cytometry, urea and electrolytes, calcium and urate, liver function and lactate dehydrogenase (LDH) tests, beta 2 microglobulin, erythrocyte sedimentation rate and C-reactive protein (blood tests indicating organ dysfunction require further examination)
• serology to exclude infectious diseases including Epstein-Barr virus, human immunodeficiency virus and others is often needed (note that laboratory tests can indicate Hodgkin lymphoma and DLBCL may be present, but normal results do not indicate lymphoma absence)
• imaging of the affected area using ultrasound, x-ray and computed tomography (CT) scans, as appropriate
• biopsy, as appropriate
• a fine-needle aspiration is rarely discriminatory in this setting; a core biopsy may be appropriate (note that a negative fine-needle aspiration and normal core biopsy in the presence of a highly suspicious clinical case cannot indicate lymphoma absence) (Karimi-Yazdi et al. 2014)
• a period of observation of up to four weeks for patients without significant or progressive symptoms.

If the general practitioner suspects a cancer diagnosis or an aggressive lymphoma histological diagnosis has not been performed, they must refer the patient to an appropriate specialist who has access to multidisciplinary support to make the diagnosis.

If the general practitioner confirms a cancer diagnosis with initial tests, they must then refer the patient to a haematologist or medical oncologist with professional expertise in lymphoma management.

Patients should be enabled to make informed decisions about their choice of specialist and health service. General practitioners should make referrals in consultation with the patient after considering the clinical care needed, cost implications (see referral options and informed financial consent), waiting periods, location and facilities, including discussing the patient’s preference for health care through the public or the private system.

Referral for suspected or diagnosed Hodgkin lymphoma and DLBCL 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.

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.

Tissue biopsies are required to diagnose Hodgkin lymphoma and DLBCL and before starting definitive treatment. They may have been performed before referral. Both fresh and fixed tissue samples should be collected from the tissue biopsy for anatomical pathology, and potentially flow cytometry, cytogenetics and gene mutation testing.

Nodal architecture is a key part of the pathological examination and therefore excisional biopsy is the preferred biopsy method where possible. Where excisional biopsy or large incisional biopsy is not possible a core needle biopsy that samples the maximum number of cores with the largest calibre possible should be considered (NICE 2016). Fine-needle aspirations are not suitable for diagnosing lymphomas (Armitage et al. 2017).

Surgery is a diagnostic procedure and rarely therapeutic. Therefore, the least invasive surgical method is recommended for diagnosis. If a highly invasive or extensive surgical procedure is being considered, consultation with the multidisciplinary team is required.

Pathology specimens should be reviewed by a pathologist with expertise in diagnosing lymphomas. This should be done at a treatment centre before a treatment plan has been instituted.

Additional testing of the lymphoma should be conducted where relevant to determine appropriate treatment options. For DLBCLs, fluorescence in situ hybridisation can be useful to identify high-grade B-cell lymphomas with MYC and BCL2 or BCL6 rearrangements (NICE 2016).

Staging is a critical element in treatment planning and should be clearly documented in the patient’s medical record.

Staging for aggressive Hodgkin lymphoma and DLBCL involves these tests:

• imaging with an FDG-PET/CT scan – where treatment may include radiation therapy, consultation with a radiation oncologist is required to determine any further imaging and evaluation needs before starting treatment (PET-CT scan should be performed as a radiation therapy planning scan in treatment position in selected patients)
• laboratory studies to evaluate LDH, calcium and urate (Armitage et al. 2017) – a full blood test should be performed and, if significantly abnormal, bone marrow biopsy should be considered
• determining a prognostic score using either the International Prognostic Score for Hodgkin lymphoma (Hasenclever & Diehl 1998) or the International Prognostic Index for DLBCL (Shipp 1993)
• central nervous system (CNS) evaluation including imaging and cerebrospinal fluid sampling in those subsets at high risk, or with clinical symptoms, as indicated by specific extra nodal sites of involvement, a high International Prognostic Index score and/or elevated serum LDH (note that Hodgkin lymphoma rarely involves the CNS and these evaluations are not routinely required in these patients; 5 per cent of cases of systemic DLBCL may involve the CNS).

Viral serology for HIV and hepatitis B/C can assist in refining the differential diagnosis and identifying risk factors for lymphoma as well as potential risks during treatment.

Visit the Cancer Institute New South Wales website for information about understanding the stages of cancer.

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.

Patients should be encouraged to participate in research or clinical trials where available and appropriate.

For more information visit the Cancer Australia website.

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

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

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

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

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

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

Initiate advance care planning discussions with patients before treatment begins (this could include appointing a substitute decision-maker and completing an advance care directive). Formally involving a palliative care team/service may benefit any patient, so it is important to know and respect each person’s preference (AHMAC 2011).

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 at 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 recurrent or residual disease.

These online resources are useful:

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

The team should support the patient to participate in research or clinical trials where available and appropriate, regardless of geographical location or ethnic or linguistic background. Many emerging treatments are only available on clinical trials that may require referral to certain trial centres.

For more information visit the Cancer Australia website.

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

After completing initial treatment, a designated member of the multidisciplinary team (most commonly nursing or medical staff involved in the patient’s care) should provide the patient with a needs assessment and treatment summary and develop a survivorship care plan in conjunction with the patient. This should include a comprehensive list of issues identified by all members of the multidisciplinary team involved in the patient’s care and by the patient. These documents are key resources for the patient and their healthcare providers and can be used to improve communication and care coordination.

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

• the diagnostic tests performed and results
• diagnosis including stage, prognostic or severity score
• tumour 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 providers.

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

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

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

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

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

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

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

• what medical follow-up is required (surveillance for recurrence or secondary and metachronous cancers, screening and assessment for medical and psychosocial effects)
• model of post-treatment care, the health professional providing care and where it will be delivered
• care plans from other health providers to manage the consequences of cancer and cancer treatment
• referral to a specialist multidisciplinary team for long-term follow-up of late effects for most patients who have received intensive multi-modality or multiple therapeutic interventions with multidisciplinary surveillance or management needs
• wellbeing, primary and secondary prevention health recommendations that align with chronic disease management principles
• rehabilitation recommendations
• available support services
• a process for rapid re-entry to specialist medical services for suspected recurrence.

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

A reasonable surveillance schedule is clinical assessment with a careful history and physical examination, every three to four months for the first two to three years after treatment, then consideration of longer annual review in some cases.

Imaging studies should not be performed routinely in patients in first remission but may be added to this schedule in select patients. This, however, depends on the therapeutic plan for managing relapse, with the frequency determined by the level of individual patient risk and specific modality (CT or functional imaging). This is based on the region considered to be at risk and the presence of residual radiological abnormalities in which structural imaging may be less sensitive to minor changes.

Potential late effects of therapy that may require specific screening and monitoring will be determined by the primary treatment used. If radiation therapy was incorporated, the doses used and fields treated will also be monitored. These may include cognitive, endocrine and reproductive surveillance (pituitary, thyroid, gonadal), cardiac assessment, osteoporosis, myelodysplasia, renal function and secondary malignancies (particularly breast cancer in young females where radiation therapy encompasses breast tissue).

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

Care in the post-treatment phase is driven by predicted risks (e.g. the risk of recurrence, developing late effects of treatment and psychological issues) as well as individual clinical and supportive care needs. It is important that post-treatment care is based on evidence and is consistent with guidelines. Not all people will require ongoing tests or clinical review and may be discharged to general practice follow-up.

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

General practitioners (including nurses) can:

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

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

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

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

For more information visit the Cancer Australia website.

Some patients may present with symptoms of recurrent or residual 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 recurrent or residual disease.

Signs and symptoms will depend on the type of cancer initially diagnosed and the location of disease. Most cases of recurrent Hodgkin or DLBCL are identified through routine follow-up or by the patient presenting with symptoms, or with abnormal ‘non-specific’ laboratory tests such as serum LDH. Symptoms can often present as described in section 2.1.

When there is clinical suspicion of recurrence:

• Comparing current PET-CT or CT scans to previous images can help to confirm recurrence. If recurrence is detected, tissue biopsy and restaging may be necessary.
• Bone marrow biopsy may be necessary if aggressive treatment is being considered.
• LDH levels and other testing may be used to determine prognostic factors.

Managing recurrent or residual disease is complex and should therefore involve all the appropriate specialties in a multidisciplinary team including palliative care where appropriate. Some instances of recurrent or residual disease remain potentially curable with intensive therapies, and clear documentation of the patient’s wishes of the goals of treatment are a fundamental element of this phase of treatment planning. 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 Aand B, and in the special population groups section 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 and end-of-life plans.

If there is an indication that a patient’s cancer has returned, care should be provided under the guidance of a treating specialist. 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 location, extent of recurrent or residual disease, previous management and the patient’s preferences.

In managing people with Hodgkin lymphoma and DLBCL, treatment may include these options:

• conventional-dose salvage chemotherapy
• high-dose chemotherapy with autologous stem cell transplantation
• palliative chemotherapy
• allogeneic stem cell transplantation (see section 6.4.1)
• radiation therapy
• immunological or targeted therapies
• CAR-T therapy (chimeric antigen receptor therapy [engineered immune cells]).

Some of these treatments are not available at all treatment centres and referral to specialised centres may be appropriate.

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

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

Advance care planning is important for all patients with a cancer diagnosis but especially those with advanced or relapsed 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 (AHMAC 2011).

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.

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 the Cancer Australia website.

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 nursing.

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 (AHMAC 2011).

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).

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

• Palliative Care Australia
• Advance Care Planning Australia 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 the Cancer Australia website. See ’Resource list’ for additional clinical trial databases.

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 cancer-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 staff.

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.

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

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

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

At a national interdisciplinary workshop convened by the Clinical Oncology Society of Australia, it was recommended that people over the age of 70 undergo some form of geriatric assessment, in line with international guidelines (COSA 2013; palliAGED 2018). Screening tools can be used to identify those patients in need of a comprehensive geriatric assessment (Decoster et al. 2015). This assessment can be used to help determine life expectancy and treatment tolerance and guide appropriate referral for multidisciplinary intervention that may improve outcomes (Wildiers et al. 2014).

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

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

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 needs.

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 adults.

The rarity and complexity of childhood cancer provides a real challenge in delivering optimal care. Despite overall survival rates of more than 80 per cent (Cancer Australia 2015b), treatments for paediatric cancer are often prolonged and complicated and have a narrow therapeutic index.

High-quality evidence-based care is required not only to deliver therapy and supportive care but is essential in the diagnosis phase, post-treatment surveillance, long-term follow-up care and late effects surveillance.

Children’s cancer services actively participate in clinical trials as a way of participating in research and improving outcomes for children. Evidence shows that best outcomes demand a well-coordinated, timely, multidisciplinary approach requiring effective collaboration of health services working together as a team (Children’s Oncology Group 2012; PICS 2019). Integrated care is fundamental to paediatric cancer care and service delivery.

For more information on paediatric care refer to the Paediatric Integrated Cancer Service’s 2019 Victorian paediatric oncology care pathway: Providing optimal care for children and adolescents – acute leukaemia, CNS tumours and solid tumours.

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, collectively ‘LGBT’. 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.

Sexual orientation and gender identity are relevant across the entire spectrum of cancer care, from prevention to survivorship and end-of-life care. LGBT people are less likely to participate in cancer screening, and some segments of the LGBT 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 LGBT people that may affect decision making. Additionally, the LGBT population experiences higher rates of anxiety, depression and stressful life circumstances, and may be at risk of inferior psychosocial outcomes following a cancer diagnosis. LGBT 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 LGBT 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 LGBT people with cancer, healthcare providers should:

• display environmental cues to show an inclusive and safe setting for LGBT 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 care.

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. The model targets the type and level of intervention required to meet patients’ supportive care needs.

Patients who have undergone stem cell transplants may have cognitive impairments for up to three years post procedure (Sharafeldin et al. 2018). Long-term follow-up and identification of strategies (e.g. maintaining written notes and repeating information) to enable patients to cope with alterations in cognitive function may be required.

High-dose chemotherapy is both physically and emotionally demanding. People undergoing this treatment may feel exhausted, depressed or anxious for years after treatment. Some patients may present with symptoms of post-traumatic stress (Ciavarella et al. 2017). Regular screening and ongoing monitoring for depression by clinicians is part of long-term follow-up. Referral to a psychologist or psychiatrist may be required.

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

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

Additional considerations that may arise for the multidisciplinary team include:

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

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

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

The lead clinician should seek a comprehensive list of all complementary and alternative medicines being taken and explore the patient’s reason for using these therapies and the evidence base. A transparent and honest discussion that is free from judgement should be encouraged.

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

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

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

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

Advance Care Planning Australia

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

• Telephone: 1300 208 582
• Website

Australasian Leukaemia and Lymphoma Group

The Australasian Leukaemia and Lymphoma Group (ALLG) is a not-for-profit clinical trial organisation that sponsors local and international investigator initiated clinical trials. ALLG has a list of clinical trials available for patients with haematological malignancies including leukaemia and lymphoma for patients to participate in.

• Website

Australian Cancer Survivorship Centre

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

• Telephone: (03) 8559 6220
• Website

Australian Commission on Safety and Quality in Health Care

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

Beyond Blue

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

• Telephone: 1300 22 4636
• Website

Cancer Australia

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

• Website

Cancer Council’s Cancer Information and Support Service

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

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

Cancer Council’s Cancer Connect

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

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

For more information on Cancer Connect call Cancer Council 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:

• Australian clinical trials
• Australian New Zealand Clinical Trials Registry
• ClinicalTrials.gov
• Australasian Leukaemia & Lymphoma Group (ALLG)

CanEAT pathway

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

• Website
• Website

Guides to best cancer care

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

The guides are located on an interactive web portal, with downloadable PDFs in plain English and translations in multiple languages.

• Website

The Leukaemia Foundation

Provides information, education and support programs for people living with lymphoma.

• Telephone: 1800 620 420 (Monday to Friday, 9.00am – 5.00pm)
• Website

Look Good, Feel Better

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

• Telephone: 1800 650 960
• Website

Lymphoma Australia

Provides patient and carer support and education on all aspects of lymphoma and lymphoma treatment.

• Website

Lymphoma Research Foundation

Based in the United States, the Lymphoma Research Foundation provides education resources for patients and carers of people with lymphoma.

• Website

Quitline

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

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

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

Australasian Leukaemia and Lymphoma Group

The Australasian Leukaemia and Lymphoma Group (ALLG) is a not-for-profit clinical trial organisation that sponsors local and international investigator initiated clinical trials. ALLG has a list of clinical trials available for patients with haematological malignancies including leukaemia and lymphoma for patients to participate in.

• Website

Australian Cancer Survivorship Centre

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

• Telephone: (03) 8559 6220
• Website

Australian Commission on Safety and Quality in Health Care

The Australian Commission on Safety and Quality in Health Care has developed a guide for clinicians containing evidence-based strategies to support clinicians to understand and fulfil their responsibilities to cancer patients. This guide is particularly relevant to steps 3 to 6 of the optimal care pathway. The guide is titled NSQHS Standards user guide for medication management in cancer care for clinicians.

Cancer Australia

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

• Website

Cancer Council Australia

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

• Website

CanEAT pathway

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

• Website
• Website

Haematology Society of Australia and New Zealand

Provides support and advocacy for research and education in haematology, as well as opportunities for haematologists, scientists, nurses and students to promote scientific communication and education in the field of haematology.

• Website

eviQ

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

• Website

National Health and Medical Research Council

Information on clinical practice guidelines, cancer prevention and treatment.

• Website

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

This work is available from the Cancer Council website.

First published in May 2015. This edition published in June 2021.

ISBN: 978-1-76096-152-7

Cancer Council Victoria and Department of Health and Human Services Victoria 2021, Optimal care pathway for people with Hodgkin and diffuse large B-cell lymphomas, 2nd edn, Cancer Council Victoria, Melbourne.

Enquiries about this publication can be sent to optimalcare.pathways@cancervic.org.au.

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

Professor John Seymour (Chair), Haematologist, Peter MacCallum Cancer Centre

Dr Michael Dickinson, Haematologist, Peter MacCallum Cancer Centre

Ms Tracey Dryden, Nurse Consultant, Peter MacCallum Cancer Centre

Associate Professor Eliza Hawkes, Medical Oncologist, Olivia Newton-John Cancer Centre, Austin Health and Eastern Health

Ms Helena Rodi, Project Manager, Advance Care Planning Australia

Professor Robert Thomas, Special Advisor on Health, Professorial Fellow, The University of Melbourne

Associate Professor Andrew Wirth, Radiation Oncologist, Peter MacCallum Cancer Centre

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

Professor John Seymour (Chair), Director, Department of Haematology, Peter MacCallum Cancer Centre and The Royal Melbourne Hospital

Dr Phillip Campbell, Head of Haematology, Barwon Health

Dr Duncan Carradice, Haematologist, Western Health

Dr Geoff Chong, Medical Oncologist, Austin Health, Ballarat Regional Integrated Cancer Centre

Ms Tracey Dryden, National Lymphoma Coordinator, Leukaemia Foundation

Ms Jane Farrow, Senior Occupational Therapist, Peter MacCallum Cancer Centre

Asscociate Professor Michael Hofman, Nuclear Medicine Physician

Ms Lynda Katona, Manager, Psychological Service, Alfred Health

Dr Kylie Mason, Haematologist, The Royal Melbourne Hospital, The University of Melbourne

Dr Francoise Mechinaud, Director, Royal Children’s Hospital Cancer Centre

Ms Yvonne Panek-Hudson, Nurse Practitioner, Haemotology and Bone Marrow Transplant, Peter MacCallum Cancer Centre

Mr Peter Shuttleworth, Haematology Clinical Nurse Consultant, Austin Health

Mr Graeme Still, Manager, Blood and Marrow Transplant Network, Agency for Clinical Innovation

Professor Robert Thomas, Chief Advisor on Cancer, Department of Health and Human Services

Professor Andrew Wirth, Radiation Oncologist, Peter MacCallum Cancer Centre, The University of Melbourne

Ms Kathryn Whitfield, Acting Manager Cancer Services, Department of Health and Human Services

Ms Alexandra Viner, Project Manager – Optimal Care Pathways, Cancer Council Victoria

Advance Care Planning Australia

Allied Health Professions Australia

Australasian Association of Nuclear Medicine Specialists

Australasian Chapter of Palliative Medicine, Royal Australia College of Physicians

Australasian Leukaemia and Lymphoma Group

Australian and New Zealand Society of Neuroradiology

Australian and New Zealand Society of Palliative Care

Australian Cancer Survivorship Centre

Australian College of Nursing

Australian Medical Association

Australian Society of Medical Imaging and Radiation Therapy

Cancer Nurses Society of Australia

Clinical Oncology Society of Australia

Haematology Society of Australia and New Zealand

Interventional Radiology Society of Australasia

Leukaemia Foundation

Lymphoma Australia

Medical Oncology Group of Australia

Oncology Social Workers Australia and New Zealand

Royal Australasian College of Physicians

Royal Australasian College of Surgeons

Royal Australian and New Zealand College of Radiologists

Royal Australian College of General Practitioners

Royal College of Pathologists of Australasia

Alfred Health

Cancer Australia

Cancer Council Victoria, Strategy and Support Division

Cancer Institute New South Wales

Concord Repatriation General Hospital New South Wales

Consumer representative

Department of Health and Human, Health and Wellbeing Division Services, Cancer and Aged Care Unit

National Cancer Expert Reference Group

Olivia Newton-John Cancer Wellness and Research Centre

St Vincent’s Hospital Melbourne

Other stakeholders consulted to provide feedback include relevant Cancer Council committees and networks, Integrated Cancer Services, Primary Health Networks and several health services.

The multidisciplinary team may include the following members:

• Aboriginal health practitioner, Indigenous liaison officer or remote general practitioner
• care coordinator (as determined by multidisciplinary team members)*
• exercise physiologist
• fertility specialist
• haematologist/medical oncologist*
• nurse (with appropriate expertise)*
• pathologist*
• radiation oncologist*
• radiologist/imaging specialists*
• clinical trials coordinator
• dietitian
• exercise physiologist
• general practitioner
• nuclear medicine physician
• occupational therapist
• palliative care specialist
• pharmacist
• physiotherapist
• psychiatrist
• psychologist
• social worker
• spiritual/pastoral care.

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