The PPC IDEA Lab
Email: meavery@mgh.harvard.edu
Overview
The PPC IDEA Lab is comprised of interprofessional investigators collectively aiming to improve the well-being of seriously ill pediatric patients and their families.
Our research seeks to impact care throughout the illness trajectory from diagnosis, advanced illness, transitions to adulthood, end-of-life, and bereavement, and across all ages, from perinatal to young adult. Key interventions currently under development and evaluation include understanding and mitigating symptom distress in seriously ill children, goals of care and decision-making support for parents, adolescents, and young adults, and the impact of subspecialty palliative care interventions in children with cancer and other serious illnesses.
Research Projects
PediQUEST
The Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) is a long-standing program of research focused on improving symptom monitoring, communication, and care experiences for children with serious illness and their families. The program combines routine use of an electronic-patient reported outcomes system, the PediQUEST mobile App and platform, with consultation from a specialized pediatric palliative care team. This NIH-funded project was initially developed and evaluated in a multisite pilot RCT among children with advanced cancer. The program is now being adapted for children with severe neurological impairment (SNI).
Findings from these studies continue to inform ongoing research.
Building on this foundation, our team is developing a new, adaptable platform informed by the PediQUEST model in collaboration with partners at UC Irvine.
VIDEO-PEDS
Video Images about Decisions for Ethical Outcomes in Pediatrics is an NIH-funded, multi-site research program developing and testing a video-based goals-of-care intervention for families of children with cancer. Through collaboration with caregivers, clinicians, and oncologists across enrolling institutions, the team has established the intervention, implementation strategy, and trial infrastructure to support a large pragmatic study embedded in routine care.
VIDEO-PEDS will evaluate whether the intervention strengthens goals-of-care communication and documentation with primary oncology teams, using AI-assisted natural language processing to assess impact at scale.
RECHARGE
Rest and Rejuvenation Experiences among family Caregivers of children with medical complexity is a research program focused on reimagining respite care to better support children with medical complexity and their families. The work centers on understanding how caregivers experience rest, fatigue, and support needs within the realities of long-term, intensive caregiving.
Through qualitative research, stakeholder engagement, and experience-based co-design, the study is developing a new conceptual framework and intervention to promote caregiver rest and rejuvenation. This work aims to inform more responsive models of respite and family support across pediatric palliative and complex care systems.