Coping with glioblastoma: prognostic communication and prognostic understanding among patients with recurrent glioblastoma, caregivers, and oncologists

Purpose Glioblastoma (GBM) is a devastating neuro-oncologic disease with invariably poor prognosis. Despite this, research shows patients have unrealistic perceptions of their prognosis, which may relate in part to communication patterns between patients, caregivers and oncologists. The purpose of t...

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Bibliographic Details
Published in:Journal of neuro-oncology 2022-05, Vol.158 (1), p.69-79
Main Authors: Walsh, Leah E., Polacek, Laura C., Panageas, Katherine, Reiner, Anne, Walbert, Tobias, Thomas, Alissa A., Buthorn, Justin, Sigler, Allison, Prigerson, Holly G., Applebaum, Allison J., Diamond, Eli L.
Format: Article
Language:English
Subjects:
Adaptation, Psychological
Adult
Brain cancer
Caregivers
Communication
Glioblastoma
Glioblastoma - therapy
Humans
Life span
Medicine
Medicine & Public Health
Neoplasms - therapy
Neurology
Oncologists
Oncology
Patients
Physician-Patient Relations
Prognosis
Prospective Studies
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Summary:Purpose Glioblastoma (GBM) is a devastating neuro-oncologic disease with invariably poor prognosis. Despite this, research shows patients have unrealistic perceptions of their prognosis, which may relate in part to communication patterns between patients, caregivers and oncologists. The purpose of this study was to examine communication processes and goals among patients, caregivers, and oncologists to elucidate drivers of prognostic understanding (PU) in the context of recurrent GBM. Methods This was a prospective, multi-center study enrolling adult patients with GBM, caregivers, and oncologists, who independently reported the content of a specific discussion involving the disclosure of GBM recurrence. Communication processes and goals were characterized for each participant, and concordance between all dyads and patient-caregiver-oncologist triads were calculated. Results Seventeen patient, caregiver, and oncologist triads were analyzed. At the individual level, three (17.6%) patients and 8 (47.1%) caregivers reported having discussed prognosis during the clinical encounter, as compared to ten oncologists (58.8%). Seven patients (41.2%) and 5 caregivers (29.4%), versus thirteen oncologists (76.5%) reported ever discussing prognosis or life expectancy at previous appointments. Generally, patient-caregiver concordance (i.e., both answered the same) regarding communication goals and processes was low. Triads showed limited concordant responses in discussing curability ( n  = 5), prognosis ( n  = 4), end-of-life treatment goals ( n  = 4), and ever discussing prognosis ( n  = 3). Conclusion Patients, caregivers and oncologists had discordant views regarding communication processes and prognostic goals, even when recalling a single discussion. This study highlights the importance of clear and frequent communication about prognosis, and the need for further research on communication and PU in the neuro-oncology setting.
ISSN:0167-594X
1573-7373
DOI:10.1007/s11060-022-04010-x