Survivors generally need regular, ongoing, long-term follow-up because treatments for MDS are generally not curative. The survivorship care plan may need to be updated to reflect changes in the patient’s clinical status and psychosocial needs.

Provide a treatment and follow-up summary to the patient, carer and GP outlining:

• the diagnosis, tests and treatments received
• current toxicities
• interventions and treatment plans from other health professionals
• potential long-term and late effects of treatment and care of these
• supportive care services provided
• a follow-up schedule, including tests required and timing
• contact information for key healthcare providers who can offer support for lifestyle modification
• a process for rapid re-entry to medical services for suspected recurrence.

Communication

The lead clinician’s responsibilities include:

• explaining the treatment summary and follow-up care plan to the patient and/or carer
• informing the patient and/or carer about secondary prevention and healthy living
• discussing the follow-up care plan with the patient’s GP.

Checklist

• Treatment and follow-up summary provided to the patient and/or carer and the patient’s GP
• Supportive care needs assessed and referrals to allied health services actioned as required
• Patient-reported outcome measures recorded