Journal of pain and symptom management · 2026
Palliative Care in Children With Severe Neurological Impairment: The PediQUEST Refine Case Series.
СтатьяНазвание и аннотация: Перевод в очереди
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Snaman Jennifer M, Requena Maria Laura, Avery Madeline E, Herold Ben T, Balossi Miranda, DeCourcey Danielle D, Hauer Julie, Dussel Veronica, Wolfe Joanne
Аннотация
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.
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.