Caregiver survey in glioblastoma focused on cognitive dysfunction: development and results from a multicenter study

Trang H. Au, Connor Willis, Maija Reblin, Katherine B. Peters, Phioanh Leia Nghiemphu, Jennie W. Taylor, Howard Colman, Adam L. Cohen, David Ryan Ormond, Elizabeth C. Neil, Arnab Chakravarti, Nicole Willmarth, Bea Christine Balajonda, Jyothi Menon, Junjie Ma, Hillevi Bauer, Ryan S. Nelson, Malinda S. Tan, Prianka Singh, Alexander MarshallBeata Korytowsky, David Stenehjem, Diana Brixner

Research output: Contribution to journalArticlepeer-review


Aim: To develop a cognitive dysfunction (CD) focused questionnaire to evaluate caregiver burden in glioblastoma. Materials & methods: The survey was developed from stakeholder consultations and a pilot study, and disseminated at eight US academic cancer centers. Caregivers self-reported caring for an adult with glioblastoma and CD. Results: The 89-item survey covered demographics, CD symptoms and caregiver burden domains. Among 185 caregivers, most were white, educated females and reported memory problems as the most common CD symptom. An exposure-effect was observed, with increase in number of CD symptoms significantly associated with greater caregiver burden. Conclusion: This questionnaire could guide caregiver interventions and be adapted for use longitudinally, in community cancer settings, and in patients with brain metastases. Plain language summary Glioblastoma (GBM) is a very aggressive brain cancer. People who have GBM have trouble remembering things and are unable to do things they used to do. These changes can be very hard. Researchers are trying to better understand what it is like for people who take care of people with GBM (or caregivers). In this study, researchers created a new survey for caregivers. The survey included questions about what caregivers see happening in their loved one with GBM. Caregivers said that memory problems were common. Also, when the patient had more problems the caregiver had a harder time, too. Researchers hope to improve the survey and use it in the future for more studies.

Original languageEnglish (US)
Pages (from-to)173-188
Number of pages16
JournalFuture Oncology
Issue number2
StatePublished - Jan 1 2023

Bibliographical note

Funding Information:
This study was funded by Bristol Myers Squibb.

Publisher Copyright:
© 2023 Future Medicine Ltd.


  • brain metastases
  • caregiver
  • caregiver burden
  • cognitive dysfunction
  • glioblastoma

PubMed: MeSH publication types

  • Multicenter Study
  • Journal Article


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