Utility of a neurobehavioural assessment for treatment planning, educational, and family support for children undergoing bone marrow transplant for non-malignant disease. 

2023-2025 (Fiona Riewoldt Nursing/Allied Health Fellowship): Utility of a neurobehavioural assessment for treatment planning, educational, and family support for children undergoing bone marrow transplant for non-malignant disease. Alice Maier, The Royal Children’s Hospital.

Bone marrow transplantation is increasingly being offered as a cure for children with bone marrow failure syndromes and other non-malignant conditions. A bone marrow transplant is an intensive treatment with associated risks for child development that may be related to the therapy or the underlying disease. 

While there is substantial research on the risk factors that relate to poor long-term developmental, educational, and psychological outcomes in children with malignant conditions, little is known about the risks for children with non-malignant conditions like Bone Marrow Failure Syndromes. 

This study will implement a neurobehavioral assessment protocol (including evaluation of thinking skills, behaviour, emotional wellbeing, academic skills, and family functioning) as part of a routine pre-transplantation evaluation, and a review 100-days post-transplant, of children and their families undergoing a transplant at The Royal Children’s Hospital Melbourne. 

The assessment will provide the treating team with a comprehensive understanding of the individual needs of the patient and family to help guide treatment planning, promote proactive referral to support services, and identify educational requirements that can be addressed during and post-transplant. 

An overarching aim of the current study is to develop consensus guidelines for assessment and management of children’s neurobehavioral and educational needs before, during and post-transplant for patients with non-malignant conditions.