Abstract

Abstract Background/objectives Patients with high-grade glioma have high palliative care needs, yet few receive palliative care consultation. This study aims to explore themes on 1) benefits of primary (delivered by neuro-oncologists) and specialty (SPC) palliative care and 2) barriers to SPC referral, according to a diverse sample of clinicians. Methods From 9/2021-5/2023, 10 palliative physicians and 10 neuro-oncologists were recruited via purposive sampling for diversity in geographic setting, seniority, and practice structure. Semi-structured, 45-minute interviews were audio-recorded, professionally transcribed, and coded by two investigators. A qualitative, phenomenological approach to thematic analysis was used. Results Regarding primary palliative care, 1) neuro-oncologists have primary ownership of cancer-directed treatment and palliative management; 2) the neuro-oncology clinic is glioma patients’ medical home. Regarding SPC, 1) palliative specialists’ approach is beneficial even without disease-specific expertise; 2) palliative specialists have time to comprehensively address palliative needs; 3) earlier SPC enhances its benefits. For referral barriers, 1) appointment burden can be mitigated with telehealth, home-based, and embedded palliative care; 2) heightened stigma associating SPC with hospice in a population with high death anxiety can be mitigated with earlier referral to promote rapport-building; 3) lack of neuro-oncologic expertise among palliative specialists can be mitigated by emphasizing their role in managing non-neurologic symptoms, coping support, and anticipatory guidance. Conclusions These themes emphasize the central role of neuro-oncologists in addressing palliative care needs in glioma, without obviating the need for or benefits of SPC. Tailored models may be needed to optimize the balance of primary and specialty palliative care in glioma.

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