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.
Though parents of children newly diagnosed with cancer desire detailed information about their children's anticipated short- and long-term outcomes, many parent do not have a complete or accurate understanding of what to expect from their child's treatment. These knowledge and information gaps prevent parents from optimally preparing for their children's futures and may hinder their engagement in care and decision-making. In the proposed study, we will use stakeholder input to develop, refine, and then pilot-test a novel family- centered communication intervention, with the ultimate goal of better informing parents of what to expect during and after their child's cancer treatment.
