You tell us: What does quality of life mean for people with brain tumors?
By Liz Salmi and Bethany Kwan, PhD, MSPH
Hi, we’re Liz and Bethany, co-leads for a research group called the Brain Cancer Quality of Life Collaborative. This Collaborative involves a team of patients, care partners, clinicians, social scientists, policy makers and researchers who all have one goal in mind: to improve the quality of life for people facing brain tumors.
We invite you to join us on Sunday, April 8, 2018, for a special chat where we will host a live discussion on the concept of “quality of life” for people with brain tumors and their loved ones via Twitter. The chat runs from 6-7 p.m. Pacific/9-10 p.m. Eastern.
The purpose of this discussion is to find out what matters most to you when making decisions about your healthcare. There are no wrong answers, we just truly want to learn from you.
“Quality of life” in the context of healthcare includes domains related to physical, mental, emotional, and social functioning. It goes beyond direct measures of population health, life expectancy, and causes of death, and focuses on the impact health status has on quality of life.
The hashtag we will use for this chat is #BTSM, which stands for Brain Tumor Social Media. Click here to find the Twitter feed for #BTSM. If you’ve never participated in a tweet chat before, check out this tweet chat tutorial written by our friends in the breast cancer community.
The four main chat topics include:
- T1: When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healthcare professional?
- T2: Has your healthcare team talked with you about quality of life? What did that look like, and what did that mean to you and your loved ones?
- T3: How do your personal values (spiritual, religious, scientific, etc.) factor into decisions about your health care?
- T4: Given where you are now (e.g., in treatment, post-treatment), what does a “good healthcare outcome” look like to you?
While we’d love for you to join us during the live chat we understand that not all people like to use Twitter. We don’t want this to be a barrier to learning from you so we have designed two alternative options.
- For Facebook users, we encourage you to share your responses in the Facebook Group called Brain Tumor Talk. Starting on April 8, we will share each question above as a new post in group. Comment in the thread for that post so we can learn from you. Conversations will continue in the group through the end of April 2018.
- If you don’t use Twitter or Facebook you can also share your thoughts and experiences in the comments section below.
Your input will go through a process called “qualitative analysis” by some of our partners at the University of Colorado and help shape our research!
Thank you, and we look forward to hearing about what quality of life means to you.
Bethany Kwan, PhD, MSPH, is a social psychologist and health services researcher at the University of Colorado. She is also a daughter and care partner of a person who had glioblastoma. Follow Dr. Kwan on Twitter at @BethanyKwan.
Liz Salmi is a communications professional with a background in traditional and digital communications, design, and community organizing. Liz has a passion to inspire and empower regular people to become more engaged in their own health care and improve their experiences as patients. She has been living with grade II astrocytoma since 2008 and blogs at TheLizArmy.com. Connect with Liz on Twitter at @TheLizArmy.
The work of the Brain Cancer Quality of Life Collaborated is supported by the Patient-Centered Outcomes Research Institute (PCORI).