Understanding chronic pain in Neurofibromatosis Type 1 using the Neurofibromatosis Pain Module (NFPM).

Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic disorder that can cause an individual significant chronic pain (CP). CP affects quality of life and daily functioning, yet there are limited effective treatments for CP within NF1. The current study describes the impact of CP using the Neurofibromatosis Pain Module (NFPM). The NFPM is a self-reported clinical assessment that evaluates the impact of CP across multiple domains (e.g., interference, severity, tolerance, and symptomology) and three prioritized pain regions. A cross-sectional study (N = 242) asked adults with NF1 to describe and rate their pain using the NFPM. The results indicated that they reported moderate pain severity (M = 6.6, SD = 2.0) on a 0-10 scale, that 54% (n = 131) had been in pain at least 24 days in the last 30, for 75% (n = 181) sleep was affected, and 16% reported that nothing was effective in reducing their CP for their primary pain region. The current results extend previously published work on CP within adults with NF1 and indicate that more emphasis on understanding and ameliorating CP is required. The NFPM is a sensitive clinical measure that provides qualitative and quantitative responses to inform medical providers about changes in CP.

Moving Beyond Statements to Protect Transgender Youth.

This Viewpoint explores the politicized nature of gender-affirming care for transgender and nonbinary youth and how children's hospitals can provide education, resources, and access to families seeking care.

Decreasing Pain in Hospitalized Patients by Increasing Topical Anesthetic Use for Peripheral IVs.

Introduction: Venous access is a common source of pain for hospitalized patients. Topical anesthetics are effective at decreasing needle pain, can improve success rate, and decrease procedure time; however, use before peripheral intravenous line (PIV) placement is inconsistent. The aim was to reduce pain experienced by hospitalized pediatric patients by increasing topical anesthetic use for PIV placement from a mean of 11% to 40% within 6 months. Methods: The Model for Improvement was utilized. An institutional clinical pathway and PIV order panel were developed. Pre-checked orders for topical anesthetics were added to order sets. Visual aids were placed on IV carts, including reminders for anesthetics, pathway use and scripting examples. Nurses received individual feedback. Statistical process control charts were posted weekly on daily management system boards on medical-surgical floors, and data were shared at daily nursing huddles to increase awareness of performance and discuss opportunities for improvement. Results: Topical anesthetic use for PIV placement increased from a mean of 11% to 46%. Documentation of comfort measures during PIV placement increased from a mean of 6% to 13%. The percentage of PIV placements with an order for a topical anesthetic in the electronic health record increased from a mean of 14% to 54%. PIV procedures with documentation of placement attempts increased from a mean of 47% to 70%. Conclusions: Through systems and culture change, awareness of the importance of pain prevention for venous access procedures increased, and patient-centered care improved with greater collaboration between nurses, providers, and families for venous access planning.

Provider Implicit Racial Bias in Pediatric Sickle Cell Disease.

BACKGROUND/OBJECTIVES: This study is to (1) assess implicit racial bias among pediatric providers and (2) use virtual patient (VP) vignettes to determine the impact of implicit racial bias on clinical decision-making in pediatric sickle cell disease (SCD) pain care. DESIGN/METHODS: This cross-sectional study was conducted at a mid-sized, freestanding children's hospital in the northeast. Participants (N = 52) were pediatric SCD providers (87% cisgender female, 90% White, M age = 38.78). Providers completed a demographic questionnaire, the race Implicit Association Test (IAT) with adult and child faces, and a measure of SCD explicit bias (5-point Likert scale). Providers also made clinical decisions for four VP vignettes depicting Black and White youth in the emergency department (ED) with either SCD or cancer pain. Frequency tables were calculated. RESULTS: On the race IAT, providers demonstrated a pro-White implicit bias for both adult (81%) and child (89%) faces. Responses to the explicit bias measure reflected low levels of agreement with negative stereotypes about SCD patients. No significant differences emerged in providers' pain treatment decisions for Black vs. White, or SCD vs. cancer VPs. CONCLUSIONS: Findings indicate pediatric providers harbor implicit racial bias similar to the general population. Findings from VP vignettes did not demonstrate that pain treatment decision-making differed based on race or diagnosis. This may be due to standardized protocols and procedures in the pediatric emergency setting. Future research is needed to clarify the role of implicit bias in clinical decision-making and the potential efficacy of treatment protocols in preventing biases from interfering with pediatric SCD pain care.