STEP 5: Care during treatment
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 post-treatment 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 (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).
Patients starting on TKI therapy need regular haematological monitoring, at least weekly for the first four weeks and then monthly for the next three months, to detect haematological remission and cytopenias from therapy.
Outside of clinical trials, peripheral blood monitoring of the BCR-ABL level should be undertaken at three months, and then every three months indefinitely to help assess treatment response and aid adherence. In patients with stable low BCR-ABL tests and reliable compliance, testing every four months may be reasonable.
Haematologist reviews should continue on a three- to six-monthly basis, either in person or via telehealth if appropriate.
Close liaison between the patient, general practitioner and haematologist is required to optimise or reduce cardiovascular risk factors while on therapy. A team including a haematologist, general practitioner and specialist nurse is optimal to support patient education and adherence and to manage side effects.
Patients should be informed about common side effects of TKI medication so they can recognise these as they occur. Depending on the TKI, patients should be educated about the warning signs of potentially serious side effects including pancreatitis, cardiovascular disease, pleural effusions and pulmonary hypertension.
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.
Regular monitoring is essential due to the ongoing risk of losing disease control, both during and after TKI therapy. Monitoring the BCR-ABL level by PCR is indicated every three to four months. Patients will generally need to see their haematologist every three to six months to assess disease control, drug adherence and risk factors for vascular disease, and to ensure any symptoms and organ toxicities are addressed promptly. Any new developments in monitoring, treatment and/
or drug toxicities should be communicated promptly to the patient. For patients who are not living within easy reach of their haematologist, these responsibilities may be shared with the general practitioner and telehealth reviews can be incorporated where appropriate.
Evidence comparing shared follow-up care and specialised care indicates equivalence in outcomes including recurrence rate, cancer survival and quality of life (Cancer Research in Primary Care 2016).
Ongoing communication between healthcare providers involved in care and a clear understanding of roles and responsibilities is key to effective survivorship care.
In particular circumstances, other models of post-treatment care can be safely and effectively provided such as nurse-led models of care (Monterosso et al. 2019). Other models of post-treatment care can be provided in these locations or by these health professionals:
- in a shared care setting
- in a general practice setting
- by non-medical staff
- by allied health or nurses
- in a non-face-to-face setting (e.g. by telehealth).
For CML patients in blast phase who require chemotherapy or an allogeneic stem cell transplant, a more structured survivorship plan is indicated.
A designated member of the team should document the agreed survivorship care plan. The survivorship care plan should support wellness and have a strong emphasis on healthy lifestyle changes such as a balanced diet, a non-sedentary lifestyle, weight management and a mix of aerobic and resistance exercise (COSA 2018; Hayes et al. 2019).
This survivorship care plan should also cover, but is not limited to:
- what medical follow-up is required (surveillance for recurrence or secondary and metachronous cancers, screening and assessment for medical and psychosocial effects)
- model of post-treatment care, the health professional providing care and where it will be delivered
- care plans from other health providers to manage the consequences of cancer and cancer treatment
- wellbeing, primary and secondary prevention health recommendations that align with chronic disease management principles
- rehabilitation recommendations
- available support services
- a process for rapid re-entry to specialist medical services for suspected recurrence.
Survivors generally need regular follow-up for the rest of their life. The survivorship care plan therefore may need to be updated to reflect changes in the patient’s clinical and psychosocial status and needs.
Processes for rapid re-entry to hospital care should be documented and communicated to the patient and relevant stakeholders.
Care in the post-treatment phase is driven by predicted risks (e.g. the risk of recurrence, developing late effects of treatment and psychological issues) as well as individual clinical and supportive
care needs. It is important that post-treatment care is based on evidence and is consistent with guidelines. Not all people will require ongoing tests or clinical review and may be discharged to general practice follow-up.
The lead clinician should discuss (and general practitioner reinforce) options for follow-up at the start and end of treatment. It is critical for optimal aftercare that the designated member of the treatment team educates the patient about the symptoms of recurrence.
General practitioners (including nurses) can:
- connect patients to local community services and programs
- manage long-term and late effects
- manage comorbidities
- provide wellbeing information and advice to promote self-management
- screen for cancer and non-cancerous conditions.
More information
Templates and other resources to help with developing treatment summaries and survivorship care plans are available from these organisations:
- Australian Cancer Survivorship Centre
- Cancer Australia – Principles of Cancer Survivorship
- Cancer Council Australia and states and territories
- Clinical Oncology Society of Australia – Model of Survivorship Care
- eviQ – Cancer survivorship: introductory course
- org.au
- South Australian Cancer Service – Statewide Survivorship Framework resources
- American Society of Clinical Oncology – guidelines
Support cancer survivors to participate in research or clinical trials where they are available and appropriate. These might include studies to understand survivors’ issues, to better manage treatment side effects, or to improve models of care and quality of life.
For more information visit:
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 will.
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 post-treatment care and the roles of health professionals involved in post-treatment 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 recurrent disease
- 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 planning.
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.
