Improving capability and capacity of nurses to assess and manage young people with symptoms associated with acquired and inherited bone marrow failure syndromes. 

2022-2024 (Fiona Riewoldt Nursing/Allied Health Fellowship): Improving capability and capacity of nurses to assess and manage young people with symptoms associated with acquired and inherited bone marrow failure syndromes. Rachel Edwards, Clinical Nurse Consultant, Oncology Services Group, Queensland Children’s Hospital.

As a clinical nurse consultant in haematology and bone marrow transplantation, Rachel Edwards has seen first-hand the effects the treatment has on young people with Bone Marrow Failure Syndromes. 

While bone marrow transplants can be a cure for Bone Marrow Failure Syndromes, children and young people undergoing bone marrow transplant experience distressing symptoms because of their treatment and a long hospital stay. 

Rachel was awarded the inaugural Fiona Riewoldt Fellowship, and her project aims to improve symptom management for children and adolescents aged 2-18 who have received a transplant. 

The research has two arms: co-designing and implementing nursing education resources to support evidence-based symptom assessment and management and exploring the use of a patient-reported outcome measure (PROM) in clinical practice to support symptom assessment. 

This project hopes to improve the capability and capacity of nurses, enabling better assessment and documentation of symptoms, improved communication between the patient, family and the healthcare team, and provision of best practice interventions to manage symptoms. 

“Young people receiving bone marrow transplantation for Bone Marrow Failure Syndromes have complex healthcare needs,” Rachel explains. “They are best managed by an interdisciplinary care team including nurses who are competent and capable to both assess and manage symptoms associated with the condition and caused by the treatment.” 

There is robust evidence for the use of PROMs in adult clinical practice, but little is known about their use in the paediatric inpatient bone marrow transplant setting, particularly for Bone Marrow Failure Syndromes. Implementing a PROM in this project will help understand and identify the type of symptoms and level of distress experienced by patients receiving a bone marrow transplant and how information from symptom screening can inform nursing care in this treatment setting. 

Rachel is grateful for the opportunity the Fellowship provides. “The Fiona Riewoldt Fellowship has supported me by providing protected time outside my clinical role to conduct this study and has given me the opportunity to pursue a higher research degree. I am very grateful for the generous sponsorship of Flavorite, who partner with Maddie’s Vision to help make this Fellowship possible.”