Crooms Rita C, Nnemnbeng Jeannys F, Taylor Jennie W, Goldstein Nathan E, Gorbenko Ksenia, Vickrey Barbara G
Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Neurooncol Pract. 2024 Mar 14;11(4):404-412. doi: 10.1093/nop/npae022. eCollection 2024 Aug.
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 palliative care (SPC) and (2) barriers to SPC referral, according to a diverse sample of clinicians.
From September 2021 to May 2023, 10 palliative physicians and 10 neuro-oncologists were recruited via purposive sampling for diversity in geographic setting, seniority, and practice structure. Semistructured, 45-minute interviews were audio-recorded, professionally transcribed, and coded by 2 investigators. A qualitative, phenomenological approach to thematic analysis was used.
Regarding primary palliative care, (1) neuro-oncologists have primary ownership of cancer-directed treatment and palliative management and (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; and (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; and (3) lack of neuro-oncologic expertise among palliative specialists can be mitigated by emphasizing their role in managing nonneurologic symptoms, coping support, and anticipatory guidance.
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.
高级别胶质瘤患者有较高的姑息治疗需求，但很少有人接受姑息治疗咨询。本研究旨在根据不同的临床医生样本，探讨以下主题：（1）初级姑息治疗（由神经肿瘤学家提供）和专科姑息治疗（SPC）的益处；（2）SPC转诊的障碍。
从2021年9月至2023年5月，通过立意抽样招募了10名姑息治疗医生和10名神经肿瘤学家，以确保地理区域、资历和执业结构的多样性。进行了45分钟的半结构化访谈，并进行录音、专业转录，由2名研究人员进行编码。采用定性的现象学方法进行主题分析。
关于初级姑息治疗，（1）神经肿瘤学家对癌症导向治疗和姑息治疗管理负有主要责任；（2）神经肿瘤门诊是胶质瘤患者的医疗之家。关于SPC，（1）即使没有疾病特异性专业知识，姑息治疗专家的方法也是有益的；（2）姑息治疗专家有时间全面满足姑息治疗需求；（3）早期接受SPC可增强其益处。对于转诊障碍，（1）通过远程医疗、居家和嵌入式姑息治疗可减轻预约负担；（2）在死亡焦虑高的人群中，将SPC与临终关怀联系起来的较高耻辱感可通过早期转诊以促进建立融洽关系来减轻；（3）通过强调姑息治疗专家在管理非神经症状、应对支持和预期指导方面的作用，可减轻其神经肿瘤学专业知识不足的问题。
这些主题强调了神经肿瘤学家在满足胶质瘤患者姑息治疗需求方面的核心作用，但并不排除SPC的必要性或益处。可能需要定制模型来优化胶质瘤初级姑息治疗和专科姑息治疗之间的平衡。
