Brain Tumor Diaries catalogs the artistic output of a unique study bridging art, science and medicine to generate both scientific data and artistic documentation of the human condition for patients with brain tumors. Titled: Bridging the Gap: Using Video Art to Document the Human Face of Disease & Predict Quality of Life Assessments in Brain Tumor Patients, the study was initially funded by Indiana University’s New Frontiers in the Arts and Humanities Exploratory Grant program.
Begun in 2016 in Indianapolis, the study focuses on how pet therapy impacts a patient’s outlook, the potential of using photographs of patients to assess quality of life, and leverages the power of artistic storytelling to voice the hardships and resulting wisdom that come when everyday people face the debilitating and all too often deadly disease of brain cancer. The artwork features slow motion video portraits of brain tumor patients as they speak about how their diagnoses have changed their outlook on life. Dr. Mahua Dey, Assistant Professor of neurosurgery at IU School of Medicine and Stefan Petranek, Associate Professor of Photography and Intermedia at Herron School of Art and Design are co-PIs on the study. The Study continues to seek patients with brain tumors.
The project's name comes from Scott Norris' book Brain Tumor Diaries: Impressions of the Brain Cancer Experience published in 2011. As a brain tumor survivor, Norris speaks to the very experience the patients chronicalled in this project endure. He has graciously allowed us to use his title for the project.
I started this project because I knew that brain tumor patients staring down death had something invaluable to teach me about life. Most days we are too busy with our “business” to appreciate it. I know I am. And rarely do we stop to listen to those who face death through illness, to see through their lives what really matters. Utilizing slow motion video and recordings from patient interviews, this project attempts to bring forth patients’ wisdom as they face one of the most deadly and daunting diseases. While the magnanimous world of medicine tirelessly works to provide better treatment outcomes, we must also realize pre-mature death will always be part of life. Humbled by these patients’ willingness to share their experiences, fears, and realizations with me, I hope these video portraits convey the human face of disease and give us pause to consider how we might better appreciate our own lives.
Brain Tumor Facts
Brain tumors can be benign or malignant. Tumors originating in the brain or migrating to the brain from other primary sites (such as the lungs, breast, or skin) can have a devastating impact on a patient’s quality of life. Our brain controls all of our vital functions as well as more complex functions such as thought, speech, body movements and most qualities we associate with being human. Thus, when a tumor grows in the brain, it poses some unique challenges that are not seen in other forms of cancers because it can affect mobility, thought processes, the way a patient talks, and even their personality. In addition to all the neurological complications, malignant brain tumors have very poor prognosis with median survival rates averaging less than 2 years.
Critical Brain Tumor Statistics (obtained from ABTA website)
- There are nearly 700,000 people in the U.S. living with a primary brain and central nervous system tumor.
- Nearly 80,000 new cases of primary brain tumors are expected to be diagnosed this year. 32% of brain and CNS tumors are malignant.
- Survival after diagnosis with a primary brain tumor varies significantly by age, histology, molecular markers and tumor behavior.
- There are more than 100 histologically distinct types of primary brain and central nervous system tumors. This year, nearly 17,000 people will lose their battle with a primary malignant and central nervous system brain tumor.
What Is Pet Therapy ?
Animal-assisted therapy or pet therapy is a type of therapy that involves animals as a form of treatment. Dogs are the most typical animal used in pet therapy. The goal of pet therapy is to improve a patient's social, emotional, or cognitive functioning by interaction with a trained therapy pet. Studies have shown that pet therapy has a positive impact on physical and mental health of the patients. Engaging in pet therapy results in decreased blood pressure, reduced anxiety, and increase in the release of endorphins by the body. Endorphins are attributed to feeling happy, trusting and optimistic. Thus, pet therapy is understood to have a positive impact on attitudes towards treatment and healing.
HOW TO ENROLL IN THE STUDY
The IU Health Neuroscience Center continues to seek patients with brain tumors to participate in this study. In this voluntary study, patients will:
- Spend approximately 10-15 minutes with a therapy dog
- Fill out a quality of life questionnaires during the experience
- Agree to have their photo/video taken for the project and have it exhibited and published.
If you or someone you know may be interested, please contact Jennifer Pencek at 317.396.1286 to learn more and enroll.
Image Credit: Sidney Traylor
How it began:
In the study, patients are interviewed, photographed, and filmed by Stefan Petranek and spend 10-15 minutes with a pet therapy dog. Before and after these experiences patients are asked to fill out a battery of standardized quality of life questions to see if their mental state and projections about their situation have changed. The session lasts about an hour. Once short video portraits of patients have been created, they are exhibited to the public.
This unique project began when Doctor Dey, a neurosurgeon at IU’s school of medicine came across a previous documentary art project called The Genetic Portrait Project by Stefan Petranek, a faculty member at Herron School of Art & Design. A discussion ensued about how the two might collaborate to study how brain tumor patients’ quality of life could be improved by engagement in non-traditional experiences outside of standard clinical care. The current study was born out of the belief that a collaboration between art and science could be symbiotic and produce useful outcomes on multiple fronts.
However, the methodologies employed between science and art are vastly different and often appear incompatible. This created a healthy challenge for us as we approached a study design that would give adequate space for both an artist and scientific researcher to feel that their efforts could be shaped into meaningful outcomes in their respective disciplines. But when it comes to the subject of trying to help people and improve quality of life, science and art are often working toward similar goals and we were able to design a flexible enough protocol to allow for the analytical needs of research and the creative freedom essential for the creation of an artistic project.
Dr. Mahua Dey
As an assistant professor of neurosurgery at IU School of Medicine, Dr. Dey has a very active clinical practice at IU Health's Methodist Hospital and the IU Neuroscience Center. Highly concerned with her patient's quality of life, Dr. Dey is an advocate of pet therapy for improving quality of life. She is has an active research that seeks to develop immunotherapies for brain tumor cancers.
Born in 1977, Stefan graduated with a BA in biology from Bowdoin College and an MFA in Photography from Rochester Institute of Technology. Stefan is an associate professor or photography and intermedia at Herron School of Art and Design on the IUPUI Campus in Downtown Indianapolis. His work encompasses a broad array of interests at the intersection of art and science. You can see a larger selection of his current and past projects at his website. For other projects by Stefan, please visit his main website: www.stefanpetranek.com
Cleopatra is a Cavalier King Charles Spaniel with big eyes that will call out to you. She enjoys saying hi and eating sweet potato treats!