PROJECT SUMMARY/ABSTRACT
Though more than 80% of children with cancer will go on to be long-term survivors, most experience both
acute toxicities and late effects of therapy. Despite providers' attempts to convey information about what to
expect from treatment in the short- and long-term, numerous gaps in parental understanding remain. Most
parents do not have an accurate understanding of their child's prognosis or risk of late effects of treatment, and
as a result, many feel poorly prepared for treatment experiences and survivorship. To address these gaps, the
proposed project will develop and pilot test Expectations for Pediatric Cancer Treatment (EXPECT), the first
family-centered intervention to improve communication and information about pediatric cancer therapy at
diagnosis. EXPECT will have two components, written materials summarizing key information about treatment
and side effects for use during the informed consent conversation with providers, and a website for parents
which will contain more detailed information including videos of actual parents and children describing their
treatment experiences. Using stakeholder interviews and iterative feedback, we will develop and refine
EXPECT for use in initial informed consent conversations in pediatric acute lymphoblastic leukemia (ALL), the
most common malignancy of childhood. We will then test the intervention in 30 treatment conversations in ALL,
assessing feasibility and acceptability, and evaluating preliminary outcomes relative to 30 parents who did not
receive the intervention. This proposal has the following 3 interrelated and complimentary aims: 1) To
determine information needs and optimal strategies for sharing early treatment information through qualitative
stakeholder interviews of parents, survivors, and providers. 2) To design and refine a prototype EXPECT using
Aim 1 qualitative data and input from a multidisciplinary steering committee with disease and methodologic
expertise including parent advisors. 3) To evaluate feasibility, acceptability, and preliminary outcomes of
EXPECT in a pilot trial within the current Dana-Farber Cancer Institute (DFCI) ALL Consortium multi-
institutional clinical trial. At the conclusion of the proposed study, the resultant intervention, EXPECT, will be
ready for testing in a randomized controlled trial (planned R01). Throughout the study, the PI, Dr. Greenzang,
will be supported by a seasoned mentorship team and advisory panel with expertise in health communication,
intervention development, and implementation science. She will engage in career development and training
activities focused on qualitative and quantitative research methods, implementation science, and conduct of
multicenter trials to prepare her for a career as an independent investigator, all while pioneering the first
patient- and family-centered communication intervention in pediatric oncology. In so doing, she will not only
develop an approach to optimally prepare all parents of children with cancer for their children's care during
treatment and beyond, but also expand our knowledge of what type of information patients and families desire
at the time of cancer diagnosis and how best to transmit that information.