Family Perception of Pain Management in Patients With Severe Neurologic Impairment

Pain is underrecognized and undertreated in the pediatric population.1–5 Children with severe neurologic impairment (SNI) are a particularly vulnerable subgroup, as they are nonverbal and exhibit atypical pain behaviors that require individualized approaches.6,7 They are at heightened risk for pain, due to their underlying conditions, central nervous system pathologies, and frequent exposure to laboratory monitoring and procedures1,3,5,6,8–10 Pain management is further complicated by a greater risk of medication-related adverse effects due to underlying conditions and/or polypharmacy.4,6,9 This study aimed to compare satisfaction with pain management between families of children with SNI against that of all patients admitted to the general pediatric hospital service (GPHS) and to understand parental perspectives on the quality of pain management for children with SNI during hospitalizations.This project was conducted at a tertiary academic children’s hospital and focused on patients with SNI admitted to GPHS, which cares for most children with SNI at our institution. Patients were identified using International Classification of Diseases, Tenth Edition (ICD-10) codes in the electronic medical record problem list, corresponding to diagnoses commonly associated with SNI (Supplement Material 1). Hauer et al define SNI as “severe impairment of the central nervous system resulting in lifelong intellectual disability and limited verbal communication, often with coexisting motor impairment.”6ICD-10 codes were identified based on this definition, and we excluded those that could also apply to children without SNI to improve specificity.Families of patients with SNI were invited to complete a discharge-day survey, which included 8 original questions developed by the study team and 3 from the hospital’s standard Press Ganey questionnaire related to satisfaction with pain management (Supplemental Material 2). Surveys were available in English, Spanish, and Somali—the 3 most spoken languages in our patient population. Original questions were developed to address stakeholder concerns and literature recommendations.4,5,8,9 We excluded patients admitted for nonaccidental trauma, under Child Protective Services (CPS) custody, or receiving palliative or end-of-life care.The hospital’s standard Press Ganey questionnaire is distributed to all patients admitted to GPHS unless they meet exclusion criteria: age over 18 years at discharge, CPS referral, newborn admission, deceased, on the Do Not Survey list, or survey completed in the past 90 days. We compared the percentage of families providing a 5-out-of-5 satisfaction score for the question “How well was your child’s pain addressed” between our target population and the Press Ganey population using a 2-sided, 1-sample proportion test. Other survey responses were summarized using frequencies and percentages and visualized with stacked percent bar plots. The institutional review board determined this project did not require review under 45 CFR 46.102.Between March and September 2022, we collected 50 surveys from our target population and 178 responses for the Press Ganey questionnaire. After excluding surveys with missing responses, 44 remaining surveys from our target population revealed that 52% of families rated pain management satisfaction as 5 out of 5, compared with 74% in the general pediatric population (P = .0018) (Figure 1).Families reported higher pain management satisfaction with nursing staff than with physicians (Figure 2A). Fewer than 50% of families gave a 5-out-of-5 rating for timely pain management. Most caregivers experienced anxiety about their child’s pain during hospitalization (Figure 2B). Families felt engaged in pain management: 79% felt definitely involved, 19% felt somewhat involved, and 2% felt not involved.Children with SNI are at an increased risk for underrecognized and undertreated pain. We identified a 22% equity gap in 5-out-of-5 pain management satisfaction scores between families of children with SNI and those without. Pain management was a source of anxiety for over 80% of families, despite most feeling involved in care decisions.One limitation is that excluding ICD-10 codes to improve specificity may have resulted in missing some patients with SNI. Another is that for the Press Ganey questionnaire, we were unable to separate responses from families of patients without SNI. A third limitation is the less than 15% response rate for Press Ganey; the response rate for our target population was 78%.Inadequately managed pain can affect length of stay, family satisfaction, and long-term outcomes. Children with SNI are a small but growing population who deserve equitable care. Important next steps include partnering with families to develop system-based interventions that address the individual needs of this population.