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1.
Patient Prefer Adherence ; 15: 2009-2016, 2021.
Article in English | MEDLINE | ID: mdl-34531651

ABSTRACT

Navigating care for patients with cancer can be overwhelming considering the multiple specialists they encounter and the numerous decisions they must make. For patients with glioblastoma (GBM), management is further complicated by a poor prognosis, feelings of isolation, urgency to treat, and cognitive decline associated with this rare and progressive disease. For these reasons, it is imperative that shared decision-making (SDM) be integrated into standard practice to ensure that the risks and benefits of all treatments are discussed and weighed with the patient's expectations and goals in mind. In this manuscript, the importance of SDM in GBM and the potential benefits to the practice and patient are discussed from the unique perspective of advocacy leaders. Their insights from interactions with patients and caregivers provide a template for empowering patients, improving patient-physician communication and understanding, and reducing patient and caregiver anxieties. Ultimately, increased SDM may lead to a better quality of life and improved treatment outcomes.

2.
Neurooncol Pract ; 8(6): 662-673, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34777835

ABSTRACT

BACKGROUND: The development of brain metastases (BM) is one of the most feared complications of cancer due to the substantial neurocognitive morbidity and a grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have demonstrated promising intracranial response rates for tumors of multiple histologies. As overall survival for these patients improves, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been an adequate study to specifically explore these questions of survivorship and practice standardization for patients with advanced cancer and BM. METHODS: Here, we present results from a cross-sectional survey in which we analyze responses from 237 patients, 209 caregivers, and 239 physicians to identify areas of improvement in the clinical care of BM. RESULTS: In comparing physician and patient/caregiver responses, we found a disparity in the perceived discussion of topics pertaining to important aspects of BM clinical care. We identified variability in practice patterns for this patient population between private practice and academic physicians. Many physicians continue to have patients with BM excluded from clinical trials. Finally, we obtained patient/physician recommendations on high-yield areas for federal funding to improve patient quality of life. CONCLUSION: By identifying potential areas of unmet need, we anticipate this wealth of actionable information will translate into tangible benefits for both patients and caregivers. Future studies are needed to validate our findings.

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