Optimal timeframes & summary

Evidence-based guidelines, where they exist, should inform timeframes. Treatment teams need to recognise that shorter timeframes for appropriate consultations and treatment can promote a better experience for patients. Three steps in the pathway specify timeframes for care (Figure 3). They
are designed to help patients understand the timeframes in which they can expect to be assessed and treated, and to help health services plan care delivery in accordance with expert-informed time parameters to meet the expectation of patients. These timeframes are based on expert advice from the MDS Working Group.

Timeframes for care

Step in pathway Care point Timeframe
Presentation, initial investigations and referral Signs and symptoms Presenting symptoms should be promptly and clinically triaged with a health professional.
Initial investigations initiated by GP Investigations usually begin within days to a few weeks of detecting cytopenias, depending on the symptoms and acuteness of the presentation. The GP should have results and review the patients within 4 weeks, or sooner if they are acutely unwell.
Referral to specialist Investigations begin depending on symptoms and acuteness of presentation, usually within 4 weeks of receiving initial test results. Urgent referral should occur within 2 weeks if listed indicators of concern are observed.
Diagnosis, staging and treatment planning Diagnosis and staging Timing of diagnostic Investigations should be guided by symptoms and acuteness of presentation. Results of initial diagnosis work-up are usually returned within several weeks, but specialist testing may take longer.
Multidisciplinary meeting and treatment planning If indicated for the patient, the multidisciplinary team should meet to discuss newly diagnosed patients before definitive treatment.
Treatment Specific therapies for lower and higher risk Lower risk MDS treatment is guided by clinical presentation and urgency. Higher risk MDS treatment should begin within 6 weeks of initial specialist consultation. Ongoing close monitoring could be considered depending on the patient’s circumstances
Allogeneic stem cell transplant Guided by clinical presentation and urgency for higher risk and occasionally lower risk MDS. Early referral to transplant is recommended for patients under 70 years of age and with higher risk MDS. However age-specific frailty score and performance status should be considered.

Seven steps of the optimal care pathway

Step 1: Prevention and early detection

Step 2: Presentation, initial investigations and referral step

Step 3: Diagnosis, staging and treatment planning

Step 4: Treatment

Step 5: Care after initial treatment and recovery

Step 6: Managing refractory, relapsed, residual or progressive disease

Step 7: End-of-life care

This pathway covers myelodysplastic syndromes (MDS) in adults. MDS comprises a heterogenous group of myeloid disorders with a highly variable clinical course, characterised by ineffective haematopoiesis leading to blood cytopenias. MDS progresses to acute myeloid leukaemia (AML) in approximately 30 per cent of cases (Granfeldt Østgård et al. 2015).

In 2021, the yearly incidence rate of MDS in Australian adults was estimated to be 4.7 cases per 100,000, with a five-year relative survival rate of 37 per cent. The median age of diagnosis in Australia was estimated to be 78 years of age, with 93 per cent of all patients diagnosed over the age of 60 (AIHW 2021). MDS is a blood cancer related to leukaemia causing bone marrow failure. Higher risk MDS has a prognosis equivalent to other high-risk blood cancers.