Palliative Care in Children With Severe Neurological Impairment: The PediQUEST Refine Case Series.

Abstract

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. 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. 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). 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. After refinement, PediQUEST-ResPOND was feasible, acceptable, and useful, supporting advancement to a pilot randomized trial.