# PediQUEST: Improving Children's Quality of Life through e-PROMS and Palliative Care

> **NIH NIH R01** · DANA-FARBER CANCER INST · 2021 · $128,575

## Abstract

ABSTRACT
At any one time, tens of thousands of children are living with serious illness and they and their families endure a high
degree of suffering. While national recommendations call for early palliative care (PC) integration for seriously ill
children to ease suffering, 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. The effect of using PQ to provide feedback on child's symptoms and health related
quality of life (HRQoL) to families and providers was tested in a three-site RCT, within the well established Pediatric
PC Research Network, among 104 children ≥2 years old with advanced cancer. The study demonstrated the
feasibility of conducting a multisite RCT in this patient population, and an ability to obtain child self-report. Findings
also included (a) high levels of child symptom distress, (b) association between higher symptom distress and worse
HRQoL, (c) high parental psychological distress linked to child suffering, and (d) trends towards better HRQoL in the
intervention arm. Subsequent formative research led to identification of barriers to improving symptom management
including families and providers “normalizing distress”, limited use of non-pharmacological treatment strategies, and
limited early involvement of PC. Based on Wilson-Cleary's HRQoL model, and informed by these results, the PI and
research team developed PQ Response (Response to Pediatric Oncology Symptom Experience). The intervention
includes an enhanced PQ system (web-based), coupled with early integration of a PC consulting team (Response
team). This dual strategy seeks to standardize the report of symptom distress using PQ feedback, and the providers'
response to such distress, trained to include a series of steps in their assessment and interaction with the family
including treatment and preventive strategies and family activation regarding symptom control. Pilot work for PQ
Response found it feasible, well received by families and oncologists, and potentially effective. Thus, the over-riding
aim of this study is to conduct a RCT of PQ Response versus usual care at four large pediatric oncology centers
among children ≥2 years old with advanced cancer (n=136). Hypotheses include a) children receiving the intervention
will have better (higher) HRQoL scores b) parents of children in the intervention group will report better state-anxiety,
depression and HRQoL and c) intervention group families will demonstrate higher levels of activation. Parents and
children (if ≥5 years old) in both arms will answer weekly PQ- Surveys for 16 weeks; parent anxiety, depression, and
HRQoL will be assessed every 4-weeks; and parent activation every 8 weeks. Hypotheses will be tested using mixed
effects...

## Key facts

- **NIH application ID:** 10361845
- **Project number:** 3R01NR016720-05S1
- **Recipient organization:** DANA-FARBER CANCER INST
- **Principal Investigator:** Joanne Wolfe
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $128,575
- **Award type:** 3
- **Project period:** 2017-06-08 → 2022-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10361845

## Citation

> US National Institutes of Health, RePORTER application 10361845, PediQUEST: Improving Children's Quality of Life through e-PROMS and Palliative Care (3R01NR016720-05S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10361845. Licensed CC0.

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