MyPref: A Communication and Decision-Making Tool for Adolescent and Young Adult Patients with Advanced Cancer
Adolescent and young adults (AYAs) with cancer often receive high intensity
care and experience significant symptoms at the end of life (EOL).
Additionally, AYAs experience inferior survival and worse quality of life
outcomes compared to younger children or older adults. Given therapeutic
innovations, AYAs, their parents or trusted persons (PTPs), and providers, face
progressively more treatment options, each with unique risk/benefit profiles,
requiring trading one desirable outcome for another. AYAs often face multiple
treatment-related decisions and yet they are not consistently included in
conversations around preferences for care. The multiple, complex medical
decisions require novel tools to amplify the AYAs’ role in decision-making and
augment communication. We have developed MyPref, a communication and
decision-making intervention to quantify AYA preferences and train AYAs, their
PTPs and oncologist to have preference-based discussions about for future
cancer treatment with the goal of improving care in this vulnerable AYA
We hypothesize that use of the MyPref and associated training curriculum will
augment communication and improve shared medical decision-making between AYAs
with advanced cancer, their PTPs, and providers.
Single-arm, mixed-methodology study in 40 AYAs with advanced cancer,40 PTPs,
and 15 oncologists to further develop and test the MyPref intervention (MyPref
survey with preference summary and communication and training curriculum) with
post-survey assessment of utility of MyPref in augmenting decision-making and
communication, and pilot testing of outcomes of decisional conflict and regret
in patients (N=10) that experience further disease progression.
AYAs with advanced cancer are at risk for high intensity care and poor quality
of life at end of life, which may not align with their preferences. Completion
of this study and the proposed career development plan are the first steps in
development of my NCI K08 application to support a comparative trial of MyPref
in AYA patients with advanced cancer.
Jennifer Snaman, MD, MS is an Assistant Professor
in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber
Cancer Institute in Boston, MA. She received her MD from Eastern Virginia
Medical School and her MS in Population Biology from Emory University.
Following her Pediatric Residency at the Boston Combined Residency Program, she
completed a combined training fellowship in Pediatric Hematology-Oncology and
Hospice and Palliative Medicine at St. Jude Children’s Research Hospital in
Memphis, TN in 2016. She returned to Boston in August 2017 as pediatric
oncologist and palliative care clinician and researcher. Her research interests
include decision-making and communication needs in adolescent and young adult
(AYA) patients with advanced cancer with an aim to improve goal-concordant care
in this population.