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.
Acknowledgments
The authors would like to thank the National Brain Tumor Society and Amanda Bates for contributions to this manuscript as advisors. We would also like to thank Brian Tomlinson for his participation in the roundtable discussion on May 23, 2019, in New York, NY, as a representative of CancerCare. Assistance with manuscript preparation, development of tables and figures, and process support was provided by Amanda Mower, PhD, and Marsha Scott, PhD, at Impact Communication Partners and funded by Novocure.
Disclosure
All authors have served on an advisory board for Novocure and received non-financial support. Novocure employees were involved in the preparation, review, and approval of the manuscript but did not influence insights from the authors that served as the basis for this publication. Novocure employees participated in discussions about submission of the manuscript for publication but did not influence the authors’ decision regarding the journal to which the manuscript would be submitted.
The Musella Foundation for Brain Tumor Research & Information, Inc; American Brain Tumor Association; Head for the Cure; National Brain Tumor Society; CancerCare; and EndBrainCancer Initiative have received sponsorship from Novocure. AM is a consultant for xCures and has received grants from Novocure outside of this submitted work. DEM reports grants from AbbVie, Agios/AGIOS, GT Medical, and Genentech; grants and personal fees from Novocure; sponsorship from Karyopharm; and grants and sponsorship from Foundation Medicine, outside of this submitted work. MA reports grants and honoraria from Novocure outside of this submitted work. The authors report no other conflicts of interest in this work.