Coping with Glioblastoma: A Study of Communication between Physicians, Patients, and Caregivers

Full Title

Coping with Glioblastoma: A Study of Communication between Physicians, Patients, and Caregivers

Purpose

Communication between patients and their doctors is an important component of medical care. Communication between people with glioblastoma, their caregivers, and their doctors is particularly crucial. Because this serious form of brain cancer causes a tremendous burden of symptoms and is challenging to treat successfully, competent and compassionate communication is key. At the same time, the amount of information desired and the way that information is communicated can vary from patient to patient and from family to family.

Doctors and other members of the care team at Memorial Sloan Kettering are very interested in what patients and their caregivers think about their care. Just as they are seeking to make the medical aspects of care better, they also want to improve communication. By sharing their thoughts, patients and caregivers can make their care better, as well as the care of other patients and families in the future. This study gives patients with glioblastoma and their caregivers the opportunity to share their experiences and feelings about their care.

The purpose of this study is to learn more about the way doctors communicate with people with glioblastoma and with their caregivers. Researchers will survey people with glioblastoma, their caregivers, and their doctors using questionnaires and interviews. Specifically:

  • Patients will be asked about their strategies to cope with their illness, how they feel physically and psychologically, the types of treatments they want or don’t want, and information their doctors gave them about their disease and their future outlook.
  • Caregivers will be asked about their strategies for coping with their loved one’s illness, how they feel physically, socially, and psychologically, and what information the doctor shared with them about the tumor’s growth (if they were present for those conversations).
  • Doctors will be asked about their experiences with serious discussions with patients about their future outlook, their level of stress, and what information they shared with their patients whose glioblastoma had returned.

The goal is to use the study’s findings to further improve communication between people with glioblastoma, their caregivers, and their doctors. Patients and caregivers can complete the study from home, either over the telephone or using the Internet.

Eligibility

This study includes English-speaking adult patients with grade IV glioma who are being treated at Memorial Sloan Kettering and their caregivers, as well as their doctors at Memorial Sloan Kettering.

For more information about this study, please contact Dr. Eli Diamond at 212-610-0243, or email the study team at neucoping@mskcc.org.

Protocol

15-034

Disease Status

Relapsed or Refractory

Investigator

Co-Investigators