Given the chronic and often incurable nature of CLL, as well as the frequent use of continuous therapies, long-term management is recommended to retain strong engagement with the primary managing specialist. Even when continuous therapies are used, ongoing monitoring is important to ensure optimal general health.

The nature of CLL, along with the cumulative physical and psychological effects of prolonged or repeated phases of treatment, pose substantial psychological burdens on patients, their families and carers. This should be a focus throughout all phases of 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.

Signs and symptoms of recurrent or progressive CLL such as lymphadenopathy, increasing fatigue, fevers, sweats or unintentional weight loss, and recurrent infections are usually recognised by the patient and reported at routine reviews.

After completing time-limited treatment patients should be reviewed at three- to six-monthly intervals in the first few years. These principles also apply to those patients with controlled disease who are receiving continuous therapies.

At each visit:

• a thorough history seeking any symptoms of concern such as unexplained fatigue, fevers, sweats or unintentional weight loss, and the frequency and nature of any infective episodes, should be taken
• a thorough physical examination looking for lymphadenopathy, splenomegaly or hepatomegaly should be performed
• a full blood count to monitor for the recurrence of lymphocytosis or development of other cytopenias, as well as simple biochemistry including serum LDH, should also be performed.

Routine surveillance imaging is not recommended and rarely identifies an otherwise unrecognised manifestation of disease recurrence and provides no long-term survival benefit for the patient.

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
• recommended vaccination

Survivors generally need regular follow-up, often indefinitely 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.

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
• deliver recommended

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 –