The Lung Cancer Registry Launches New International Survey Focused on Experiences and Mental Health of Caregivers

SAN CARLOS, Calif. and WASHINGTON, March 1, 2022 /PRNewswire/ -- In an attempt to bolster support for caregivers in the lung cancer community around the world, GO2 Foundation for Lung Cancer (GO2 Foundation), through its Lung Cancer Registry, has released an international caregiver survey in English, Spanish, simplified Chinese, German and French. Although not much is known about the co-survivorship experience of caregivers and patients living with lung cancer, as many as 50% of caregivers for patients with cancer experience significant anxiety or depression.^1,2

"Maybe the single best thing we can do for a caregiver is listen to their experiences and then prioritize the development of interventions so that we can make it a more supported experience," said Jamie L. Studts, PhD, Professor of Medical Oncology and Scientific Director of Behavioral Oncology at the University of Colorado School of Medicine and participant in the creation of the survey. "When do we need to do a better job at integrating the caregiver? When do we need to do a better job of protecting the caregiver? If we have enough information about the full co-survivorship experience, we can transform these systems of care."

The survey was originally conceived by GO2 Foundation staff and created in partnership with multiple caregivers, academic researchers, advocates and patient research from around the world. The survey is composed of approximately 20 questions that focus on the caregivers' mental health and well-being, coping mechanisms, cultural differences, financial contributions to their loved one's care, and the different ways that caregivers find and define value during their caring for a person living with lung cancer. Participants are asked to complete the survey twice over 6 months to capture changes in their experiences.

"I just love the idea of caregivers being looked at in the same vein as patients," Kent Smith said. Kent has been a caregiver for his wife Debra for more than 3 years since her initial diagnosis of stage 4 non-small cell lung cancer. "I've learned in these three and a half years that everyone needs help at times. Whether financial help or personal help, even just help with where to start to learn about the disease, it's okay. Currently, there is no one single resource for caregivers of people living with lung cancer, but I'm very excited about the kind of community that we could build using information shared through this survey."

GO2 Foundation's Lung Cancer Registry has staff researchers ready to analyze survey responses as they are submitted, allowing for enhanced understanding of co-survivorship experiences. Results will be shared around the world thanks to the existing global educational platforms for research dissemination that partner organizations such as the International Association for the Study of Lung Cancer have created. Allowing researchers to understand and collaborate about caregiver-provided information will enable the GO2 Foundation, through its network of associated Centers of Excellence, to develop programs based on what needs are most urgent and to tailor existing resources to individual caregivers.

"You're going to be a more robust, prepared, and grounded caregiver if you're doing a little bit to take care of yourself," Dr. Studts said. "Completing both parts of this survey—the baseline survey and the 6-month survey—can be a great start to navigating complex feelings and experiences. It's difficult to advocate when you are also suffering and lacking support."

To complete the survey or to share with caregivers in your lung cancer community, visit: www.lungcancerregistry.org .

About the Lung Cancer Registry

The Lung Cancer Registry is a community for people with all forms of lung cancer. Powered by data from patients and caregivers, this platform gives those most affected by lung cancer a voice. Registered patients, caregivers, clinicians, and researchers can access the de-identified information.

Founded in 2016, the Lung Cancer Registry is a core program of the GO2 Foundation for Lung Cancer. The Registry joined forces with the American Lung Association and the International Association for the Study of Lung Cancer to expand the effort to advance research for the world's deadliest cancer.

About GO2 Foundation for Lung Cancer

Founded by patients and survivors, GO₂ Foundation for Lung Cancer transforms survivorship as the world's leading organization dedicated to saving, extending, and improving the lives of those vulnerable, at risk, and diagnosed with lung cancer. The GO₂ Foundation serves and listens to those living with and at risk for lung cancer to reduce stigma, improve quality of life and increase survival. They empower its community by helping people navigate the paths of early detection, diagnosis and treatment. Insights allow the GO₂ Foundation to improve care, amplify awareness, drive advocacy and lead research with the vision of doubling the five-year survival rate by 2025. For more information, visit https://go2foundation.org.

The international caregiver study is in partnership with Novartis. 

References:

1. Mosher CE, Champion VL, Hanna N, Jalal SI, Fakiris AJ, Birdas TJ, et al. Support service use and interest in support services among distressed family caregivers of lung cancer patients. Psychooncology. 2013;22(7):1549-1556. Doi: 10.1002/pon.3168. Epub 2012 Sep 3.
2. Lambert SD, Girgis A, Lecathelinais C, Stacey F. Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Center. 2013;21(1):75-85. Doi: 10.1007/s00520-012-1495-7. Epub 2012 Jun 3.

SOURCE GO2 Foundation for Lung Cancer