Analyzing Cultural Preferences to Improve Patient Satisfaction in Neuro-oncologic Care
Isabella Milejczyk1, Isaac Ng2, Emily Schein1, Shariq Zaman1, Andrew Pickles1, Vikram Prabhu2, Melinda Miculinich2, Derek Wainwright2, Kevin Barton2, Jigisha Thakkar3
1Loyola Stritch School of Medicine, 2Loyola University Medical Center, 3Neuro-oncology, Loyola University Medical Center
Objective:
We aim to assess glioblastoma patient and caregiver preferences across diverse racial groups.
Background:
Glioblastoma (GBM) patients require extensive care, placing a substantial burden on caregivers. Previous studies have found that caregiver burden was significantly higher for those caring for GBM patients compared to other cancers. Early caregiver burnout can lead to premature de-escalation of care, ultimately leading to poorer outcomes. Furthermore, patients and caregivers from diverse ethnic backgrounds often have varying preferences for clinical care which can impact the patient-provider relationship, psychological adjustment, and overall satisfaction with care.
Design/Methods:
We conducted a survey of GBM patients and their caregivers who received longitudinal treatment at our institution from 2021 to 2024 to assess preferences in outpatient neuro-oncologic care. Patients were interviewed by investigators and completed a validated questionnaire assessing preferences in the delivery of care.
Results:
Of 37 GBM patients who received care at our institution, 24 participated. Patients self-identified as Caucasians (46%), Hispanic (33%), or Other (21%) including African American (8%), Asian (5%), Polish (5%) and Ukrainian (3%). When disclosing terminal diagnosis, Caucasians and Other groups favored the patient autonomy model while Hispanics preferred the family centered model. Caucasians and Other ethnic groups preferred reviewing MRI images with the physician. All groups preferred direct contact with the treating team after working hours, which was associated with fewer ER visits. All preferred same day appointments for scans and physician consultation. Regarding end-of-life discussion, Caucasians preferred discussion at time of disease recurrence, while Hispanic and Other groups preferred to have this discussion early in the course of disease.
Conclusions:
Our study identifies patient and caregiver preferences in neuro-oncologic care across different ethnic groups, offering insight into strategies for delivering high-quality, patient-centered care for individuals with brain tumors. These findings provide a framework for developing outpatient neuro-oncology policies that better meet the needs of diverse populations.
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