Caregiver burden by treatment and clinical characteristics of patients with glioblastoma

Trang H. Au, Connor Willis, Maija Reblin, Katherine B. Peters, Phioanh Leia Nghiemphu, Jennie W. Taylor, Howard Colman, Adam L. Cohen, D. Ryan Ormond, Arnab Chakravarti, Nicole Willmarth, Jyothi Menon, Junjie Ma, Hillevi Bauer, Alexandre H. Watanabe, Cornelia M. Ulrich, Prianka Singh, Alexander Marshall, Beata Korytowsky, David StenehjemDiana Brixner

Research output: Contribution to journalArticlepeer-review

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Background: Glioblastoma is an incurable disease with a poor prognosis. For caregivers of people with glioblastoma, the burden of care can be high. Patients often present with different clinical characteristics, which may impact caregiver burden in different ways. This study aimed to evaluate associations between patient clinical characteristics and caregiver burden/quality of life (QoL). Methods: Caregiver–patient dyads were enrolled at 7 academic cancer centers in the United States. Eligible caregiver participants were self-reported as the primary caregiver of an adult living with glioblastoma and completed a caregiver burden survey. Eligible patients were age ≥ 18 years at glioblastoma diagnosis and alive when their respective caregiver entered the study, with the presence of cognitive dysfunction confirmed by the caregiver. Data were analyzed with descriptive statistics and multivariable analyses. Results: The final cohort included 167 dyads. Poor patient performance status resulted in patient difficulty with mental tasks, more caregiving tasks, and increased caregiving time. Language problems were reported in patients with left-sided lesions. Patient confusion was negatively associated with all caregiver domains: emotional health, social health, general health, ability to work, confidence in finances, and overall QoL. Better caregiver QoL was observed in patients with frontal lobe lesions versus non-frontal lobe lesions. Conclusion: This study reinforced that patient performance status is a critical clinical factor that significantly affects caregiver burden, caregiving tasks, and caregiver time. Additionally, patient confusion affects multiple facets of caregiver burden/QoL. These results could be used to support guided intervention for caregiver support, customized to the patient experience.

Original languageEnglish (US)
Pages (from-to)1365-1375
Number of pages11
JournalSupportive Care in Cancer
Issue number2
Early online dateSep 11 2021
StatePublished - Sep 11 2021

Bibliographical note

Funding Information:
This study was funded by Bristol Myers Squibb. The Total Cancer Care Protocol implementation at Huntsman Cancer Institute, Utah, was supported by the Huntsman Cancer Foundation.

Funding Information:
D. Ryan Ormond has received research funding from Agios, the American Cancer Society, American Heart Association, and Medtronic and is currently employed by Amgen Inc.

Funding Information:
The authors received writing/editorial support in the preparation of this manuscript provided by Barrie Anthony, PhD, CMPP, of Evidence Scientific Solutions Inc., funded by Bristol Myers Squibb. We thank the Oncology Research Information Exchange Network (ORIEN) for support in recruitment of patients at 4 sites. We also thank Mikaela Larson at Huntsman Cancer Institute for her assistance with ORIEN sites. Lastly, we owe gratitude to the caregivers and patients who participated in this study.

Funding Information:
Phioanh Leia Nghiemphu has received grants from Genentech and Novartis.

Publisher Copyright:
© 2021, This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.


  • Caregiver
  • Cognitive dysfunction
  • GBM
  • Glioblastoma


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