Imaging, QoL and Patient-Reported Outcome and Supportive Care
Category: Imaging, QoL and Patient-Reported Outcome and Supportive Care
When ICAN(S) Becomes ICAN’T: Clinician and Staff Perspectives on In-Hospital Neurotoxicity Grading
Grace M. Ferri, MD (she/her/hers)
Fellow
Beth Israel Deaconess Medical Center
Guidelines from the American Society for Transplantation and Cellular Therapy (ASTCT) propose use of the Immune Effector Cell-Associated Encephalopathy (ICE) score as a means by which to grade Immune Effector Cell-Associated Neurotoxicity Syndrome (ICANS). However, ICE scoring may not appropriately capture ICANS among patients with limited English proficiency or diverse educational or cultural backgrounds. With the development of protocols for early ICANS treatment and the advent of CAR-T repurposing for solid tumors, creation of an accessible neurotoxicity grading framework (and an accurate clinical correlate) for all patients is paramount.
Methods:
Using a quantitative and qualitative descriptive study design, we surveyed staff members at a United States safety-net hospital experienced in grading the ICE score. We then performed an iterative thematic analysis of data embedded within free-text responses and used a modified version of the theoretical framework of acceptability to guide evaluation of a future adapted ICE score.
Results: Of the 36 survey respondents, most (27/36, 75%) agreed that lack of language concordance could lead to inaccurate ICE scores. While translation services were thought to be used appropriately (33/36, 92%), logistical barriers including availability of interpreter services (in-person, phone, iPad) were thought to impact quality of care for non-native English-speaking patients (32/36, 89%). Additional barriers to accurate ICE scoring included patient literacy, numeracy (e.g., cultural differences in measuring time), education level, or disability status (e.g., hearing or vision loss, memory or cognitive impairment). Nearly all participants (32/36, 89%) believed that a modification of the ICE score could improve quality of care, especially for non-native English speakers. Based on the perceived effectiveness of the current ICE scoring metric, staff members proposed suggestions for improvement, including baseline neurological testing and alternative scoring systems to facilitate accessibility.
Conclusions: This needs assessment demonstrated stakeholder perspectives on the standard ICE score; associated challenges among patients with limited English proficiency and illiteracy; and the utility of an alternative language-concordant and culturally humble grading system for neurotoxicity among non-native English speakers. Based on our needs assessment, we have collaborated with a multidisciplinary team of oncologists and neurologists to design a prototype for a preliminary modification of the ICE score, which we intend to validate in future work.