STEP 6: Managing relapsed or refractory disease

MDS is generally incurable, except in patients who have a successful allo-SCT. Many patients will relapse or will progress after initial therapy, have worsening symptoms or transfusion dependence and/ or progress to acute myeloid leukaemia.


Most refractory or progressive disease will be detected via routine follow-up or by the patient presenting with symptoms.


Treatment will depend on the extent of relapsed or progressive disease, previous management and the patient’s preferences. Options may include taking part in a clinical trial, treatment for acute myeloid leukaemia if the disease progresses to this and it is clinically appropriate, supportive medical management and/or palliative care.

Advance care planning

Advance care planning is important for all patients but especially those with relapsed or progressive disease. It allows them to plan for their future health and personal care and can guide future treatment if the patient is unable to speak for themselves.

Survivorship and palliative care

Survivorship and palliative care should be addressed and offered early. Early referral to palliative care can improve quality of life and in some cases survival. Referral should be based on need, not prognosis.


The lead clinician and team’s responsibilities include:

  • explaining the treatment intent, likely outcomes and side effects to the patient and/or carer and the patient’s GP.


  • Treatment intent, likely outcomes and side effects explained to the patient and/or carer and the patient’s GP
  • Supportive care needs assessed and referrals to allied health and community support services actioned as required
  • Advance care planning discussed with the patient and/or carer
  • Patient referred to palliative care if appropriate
  • Routine follow-up visits scheduled