Abstract
PediQUEST Response proposes a new system of care that expects to improve quality of life in
children, adolescents, and young adults with advanced cancer and their parents. The
investigators want to learn whether patients that are cared for using PediQUEST Response do
in fact feel better than those receiving usual care.
National recommendations call for early palliative care (PC) integration for seriously ill
children to ease suffering, however, very few randomized controlled trials (RCTs) have
evaluated whether PC improves child and family outcomes. In prior work, the investigators
developed the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST/PQ),
a software that collects electronic Patient-Reported Outcomes (e-PROMS) and generates
feedback reports.
Now, the PI and research team developed PediQUEST Response (Response to Pediatric Oncology
Symptom Experience). PediQUEST Response includes an enhanced PediQUEST system (web-based and
with an App that allows to answer surveys and see reports), that is coupled with early
integration of a palliative care consulting team (Response team). This dual strategy will
help to standardize the family report of distress, which will be done through the PediQUEST
system. It will also help standardize the providers' response to such distress, as providers
will be specifically trained. Pilot work for PediQUEST Response found it feasible, well
received by families and oncologists, and potentially effective.
Thus, the overall goal of this study is to conduct a RCT of PQ Response versus usual care at
four large pediatric oncology centers among 136 children ≥2 years old with advanced cancer.
Hypotheses include a) children receiving the intervention will have better (higher) quality
of life scores b) parents of children in the intervention group will report better
state-anxiety, depression and symptom-related stress scores, and c) intervention group
families will demonstrate higher levels of activation.
