ASSET Update May 2021

 Welcome to the ASSET study blog! We hope to use this space to share updates about the study and its outcomes with you.

To date, the ASSET study has enrolled 260 children to participate in the main study, and 158 parents have completed one or more surveys as part of the health-related quality of life sub-study. We thank all of these families for their support of our research!

You can find recent publications arising from the ASSET main study and health-related quality of life sub-study on our publications page. If you would like a copy of any of these publications, please contact our team at [email protected].

To kick off our first blog post, we are excited to share that we recently presented some early outcomes from our ASSET main study and health-related quality of life sub-study at the European Society for Paediatric Oncology annual meeting. Dr Karen McCleary, paediatric oncologist and ASSET study investigator, and Ms Clarissa Schilstra, the Health-Related Quality of Life Sub-Study coordinator, delivered the presentation.

Some key things we have learned from ASSET so far include:

1. The most common treatment-related toxicities (physical health side effects) experienced by children in our study include:
   1. Neurotoxicity (31/260; 11.9%)
   2. Venous thromboembolism (blood clot) (16/260; 6.2%)
   3. Bone toxicity (including things like Avascular Necrosis) (14/260; 5.4%)
   4. Pancreatitis (inflammation of the pancreas) (13/260; 5%)
2. Quality of life seems to increase over time from diagnosis, indicating families likely need the most support in the first few months of treatment
3. Parents reported consistently high emotional concerns in the first 3-6 months of treatment, with anxiety being the most highly rated concern
4. Parents reported that procedural anxiety (children’s worry or nervousness before medical procedures) remains a significant concern for children throughout the first year of treatment

Some things we are working on going forward include:

1. We hope to use some of these early outcomes to begin developing new research and support programs to better address children’s and families’ emotional concerns, like anxiety.
2. We will be conducting further research to understand how treatment-related toxicities may affect the costs of treatment and children’s educational outcomes.

 
If you have any questions about any of these outcomes, or about the ASSET study, please feel free to contact us at any time at [email protected]. 

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