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Palliative Care in Children With Severe Neurological Impairment: The PediQUEST Refine Case Series
Jennifer M Snaman1, Maria Laura Requena2, Madeline E Avery3
1Department of Supportive Oncology (J.M.S., B.T.H., M.B.), Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Pediatrics (J.M.S., D.D.D.,J.H.), Boston Children's Hospital, Boston, Massachusetts; Harvard Medical School (J.M.S., D.D.D., J.H., J.W.), Boston, Massachusetts; Pediatric Palliative Care Innovation, Discovery, Evaluation, and Advancement Lab (PPC IDEA Lab) (J.M.S., M.L.R., M.E.A., V.D., J.W.), Mass General Brigham for Children, Boston, Massachusetts.
Insights
The PediQUEST-ResPOND intervention effectively supports children with severe neurological impairment by integrating parent-reported outcomes and specialized palliative care. This refined approach proved feasible, acceptable, and useful for managing pediatric pain and distress.
Area of Science:
- Pediatric Palliative Care
- Neurology
- Health Informatics
Background:
- Children with severe neurological impairment (SNI) experience complex pain and distress.
- Assessing and managing this distress is challenging.
- No structured palliative care interventions for SNI distress have been evaluated.
Purpose of the Study:
- To refine the PediQUEST (PQ)-ResPOND intervention, an electronic parent-reported outcome (PRO) system integrated with specialized pediatric palliative care (SPPC).
- To assess the feasibility, acceptability, and usefulness of the intervention prior to a pilot randomized controlled trial.
- To examine preliminary outcome patterns in children with SNI and moderate-to-severe pain.
Main Methods:
- An 8-week mixed-methods B-phase training case series involving child/parent dyads.
- Parents completed weekly PRO surveys via the PQ-system and semi-structured interviews.
- SPPC team integration included consultations, PQ-Report-triggered follow-ups, and standardized distress management protocols.
Main Results:
- High survey completion and excellent acceptability were observed.
- The PQ-System facilitated reflection, symptom organization, and parental advocacy.
- The SPPC component was timely, family-centered, and quality-of-life-focused.
- All participating children experienced reduced pain scores.
Conclusions:
- The refined PediQUEST-ResPOND intervention is feasible, acceptable, and useful.
- The findings support the advancement of this intervention to a pilot randomized trial.
- This approach shows promise for improving distress management in pediatric palliative care.
Background:
Children with severe neurological impairment (SNI) experience recurrent, complex pain, and distress that are difficult to assess and manage. Specialized pediatric palliative care (SPPC) teams are well-positioned to support this population, yet no structured palliative care interventions targeting distress in SNI have been evaluated.
Objectives:
To refine the PediQUEST (PQ)-Response to Pain Of children with Neurologic Disability (ResPOND) intervention, combining electronic parent-reported outcomes with SPPC integration, by assessing feasibility, acceptability, perceived usefulness, and preliminary outcome patterns prior to a pilot randomized controlled trial.
Methods:
We conducted an eight-week, mixed-methods B-phase training case series with child/parent dyads (child with SNI with moderate-to-severe pain) receiving care at a U.S. tertiary pediatric hospital. Parents completed weekly parent-reported outcome surveys via the PQ-system and participated in semi-structured interviews (Weeks 4 and 8). Parents and primary/SPPC clinicians received weekly automated PQ-Reports summarizing child symptoms. SPPC team integration consisted of initial consultation, follow-up triggered by PQ-Reports, and use of a standardized guide for assessment and multimodal management of distress. Outcomes were analyzed using descriptive statistics (quantitative) and reflexive thematic analysis (qualitative).
Results:
Enrollment of three dyads led to intervention refinement. Survey completion was high. Acceptability was excellent. The PQ-System was valued as a tool for promoting reflection, organizing symptom information, and enhancing advocacy. The SPPC component was delivered as expected and perceived as timely, family-centered, and quality-of-life focused. Iterative refinements improved report usability, communication preferences, and documentation. All children showed reductions in most troublesome pain scores.
Conclusions:
After refinement, PediQUEST-ResPOND was feasible, acceptable, and useful, supporting advancement to a pilot randomized trial.
