Publication
Development of a parent survey to identify children with severe neurologic impairment and distress
Herold B, Dussel V, Hauer J, Requena M, DeCourcey D, Avery M, Snaman J, Wolfe J · Journal of Pain and Symptom Management · 2026
Background/Rationale Children with severe neurological impairment (SNI) frequently experience moderate to severe recurrent pain, irritability, or discomfort (“distress”). To identify children with SNI and recurrent distress for a pilot randomized controlled trial focused on improving child outcomes (PediQUEST-ResPOND), we initially screened using medical record review and the validated Pediatric Pain Profile. Among those assigned to the intervention, who were assessed by the specialized pediatric palliative care (SPPC) team, many did not meet criteria, indicating low method specificity. To improve case identification, we created a new tool. Objectives Describe the development and initial piloting of a parent-reported survey to screen children with SNI and recurrent distress. Methods We designed a semi-structured survey and administered it to families enrolled in PediQUEST-ResPOND before randomization. The tool included 4-5 items (depending on age) adapted from the Gross Motor Function Classification System (GMFCS) family-report questionnaire to identify children with SNI (communication, movement, and dependency). Eight items developed de novo assessed distress frequency, patterns, duration, characteristics, potential causes, and response to non-pharmacological interventions. Two items evaluated parental openness to new therapeutic approaches. SPPC clinicians assessed the appropriateness of SPPC consultation during the initial consult of intervention participants. Results Of 54 families enrolled, 32 completed the screening survey; 23 (72%) met criteria with 14 assigned to intervention. All 23 were nonverbal and fully dependent for mobility. Over 75% were not often calm and 100% experienced recurrent distress. About half of those eligible reported distress episodes lasting ≥30 minutes (48%), not relieved by non-pharmacological measures within 30 minutes (48%), and not being adequately addressed (52%). SPPC clinicians confirmed appropriateness of their involvement for intervention participants. Conclusion A standardized parent-reported tool may improve identification of children with SNI and recurrent distress who could benefit from SPPC. Future work will focus on validation and predictive accuracy.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.