5.2 Follow-up care

5.2 Follow-up care

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

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

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

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

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

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

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

  • what medical follow-up is required (surveillance for recurrence or secondary and metachronous cancers, screening and assessment for medical and psychosocial effects)
  • model of post-treatment care, the health professional providing care and where it will be delivered
  • care plans from other health providers to manage the consequences of cancer and cancer treatment
  • wellbeing, primary and secondary prevention health recommendations that align with chronic disease management principles
  • rehabilitation recommendations
  • available support services
  • 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. For immediate post-therapy follow-up, the frequency of consultations will be determined by the patient’s needs and may range between several times a week and six-weekly. The primary treating clinical haematologist should coordinate these, with input from the full spectrum of allied health professionals. Follow-up frequency will usually reduce over time for patients in remission.

For longer term follow-up and surveillance of patients with AML, the frequency of disease assessment will be based on whether the patient is in remission or has relapsed/progressive disease.

The general surveillance schedule for patients in first remission is:

  • for the first two to three years after treatment: full blood examination (FBE), and clinical assessment with a careful history and physical examination every three months
  • thereafter, up to five years post-treatment: FBE and clinical review every three to six months
  • then as deemed appropriate for individual patients: annual FBE and clinical review indefinitely.

For select patients undergoing intensive initial therapy, assessing for the presence or absence of MRD after consolidation therapy has been shown to predict later overt recurrence. This is also an area of very active research, and the evidence base is evolving rapidly. Currently, MRD assessment (+/– monitoring; see step 6) is appropriate for patients whose AML has one of the following molecular abnormalities: PML-RARA, CBFB-MYH11, RUNX1-RUNX1T1 or NPM1 mutation (Schuurhuis et al. 2018). Alternatively, flow cytometry for detecting phenotypically aberrant ‘different from normal’ populations in specialised laboratories may be considered.

Patients who have received allo-SCT will require specific long-term follow-up plans coordinated by the survivorship program at the transplant unit (Hilgendorf et al. 2015). In particular circumstances, follow-up care can be safely and effectively provided:

  • in the general practice setting
  • in the specialist and hospital setting, including in specialised late effects clinics staffed with members of the multidisciplinary team including physiotherapy, occupational therapy, nursing, social work, dietetics, clinical psychology and palliative care.

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

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 primary recurrence or a second primary cancer.

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