An investigation of the treatment journey of paediatric patients with acute lymphoblastic leukaemia in hospital

Background and aims: Leukaemia is the most prevalent childhood cancer, with acute lymphoblastic leukaemia (ALL) the most common sub-type. ALL cure rate is high, however, the treatment journey is long and complex. There has been limited research quantifying or describing the types and causes of delays experienced by ALL patients. This study aimed to summarise the characteristics of ALL patients; identify key milestones of the ALL treatment journey; and identify when and why delays occurred. Methods: Site: The Oncology Department of a paediatric tertiary hospital in Sydney.Sample: All patients diagnosed with ALL during a one-year period (January 10th 2013 to January 10th 2014) and treated using the Study 9 Protocol.Procedure: Data on: demographics; treatment delays and causes; and supportive care for patients were extracted via an in-depth retrospective audit of clinical information systems as well as review of the treatment protocol and discussions with key oncology clinicians at the hospital. Results: The average delays experienced during the two-year treatment journey were 33 days and 94 days for standard risk/medium risk and high risk patients respectively. Nearly 90% of treatment delays were due to low counts, other toxicities or a combination of these factors. Nine percent and 1% of the delays were attributed to organisational factors and patient factors respectively. Despite these delays, most patients completed all milestones of ALL treatment. Conclusions: The ALL patient journey is often interrupted by treatment delays, mostly due to treatment-related toxicity, but also due to patient factors and organisational issues. The use of electronic health records systems may potentially reduce delays due to organisational issues by improving care coordination.