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.

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 about the 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
• cancer 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, including referral to survivorship programs
• follow-up schedule and planned surveillance
• contact information for key healthcare

Survivorship

A referral to a survivorship program should occur at the end of treatment with the view of transitioning to the survivorship program at the end of the surveillance period. Where appropriate this should include referral to community support organisations such as, Camp Quality, Cancer Council, Canteen, Leukaemia Foundation and Redkite.

All patients should be given an updated treatment summary and a roadmap for late-effects surveillance on entering the survivorship program.

Patients and their families should be provided with educational material about survivorship, including adopting a healthy lifestyle. Large cohort studies show there is a prevalence for significant adverse long-term outcomes in ALL and recommend regular, primary care consultations.

Transition from paediatric to adult care

Most survivors of CAYA acute leukaemia will transition to a general practitioner with a treatment summary and roadmap outlining investigations and surveillance required. For patients who have undergone a transplant, transition to an adult transplantation service may be appropriate.