Studies amplify voices of patients and caregivers within the lung cancer community
WASHINGTON, Aug. 9, 2022 /PRNewswire/ -- LUNGevity Foundation, the nation's leading lung cancer-focused nonprofit organization, is pleased to report that three of our Patient-Focused Research Center (Patient FoRCe) studies have been selected to be presented at the 2022 World Conference on Lung Cancer (WCLC) to be held August 6-9, 2022, in Vienna, Austria.
These studies bring the experiences and insights of patients and caregivers to the world's largest international gathering of clinicians, researchers, and scientists in the field of lung cancer and thoracic oncology.
"Advances in lung cancer and precision medicine have exploded in the past decades – where the science of drug development has far outpaced the science of healthcare delivery. Lung cancer healthcare providers work hard to deliver quality care to patients but are one piece of the puzzle. The patient and caregiver perspectives are equally important to understand how care is being delivered and what policies and procedures can be put into place for optimal care delivery," says Upal Basu Roy, PhD, MPH, Executive Director of LUNGevity Research. "The studies presented help elucidate the needs and preferences of patients and caregivers to keep them in focus for these providers."
Bellinda King-Kallimanis, PhD, Director of Patient-Focused Research at LUNGevity, will present the initial results from PROJECT REFORM, a study that takes a thorough look at the informed consent materials that patients sign to begin enrolling in clinical trials. The study highlights many potential barriers such as the high grade-level language used in these documents, the considerable length of these informed consent forms, and the patients' difficulties in finding the information they need. Dr. King-Kallimanis will discuss this important topic during an IASLC press conference and on the IASLC podcast, "Lung Cancer Considered," with hosts Narjust Florez, MD, and Stephen Liu, MD, on Tuesday, August 9.
Dr. King-Kallimanis will also be presenting the early results from a qualitative study of the feasibility and usability of the US FDA Oncology Center of Excellence's pilot website, Project Patient Voice. This work, carried out in collaboration with the Oncology Center of Excellence, seeks to learn patients' and healthcare providers' perceptions of the website that provides patient-reported symptom data from clinical trials. This data can be used by patients and caregivers when discussing treatment options with their healthcare providers. Through patient focus groups and healthcare provider interviews, Dr. King-Kallimanis and her team determined that the pilot website was well received by all participants. The FDA is considering expanding the website based on feedback from this work to assist more patients in discussing their treatment options.
Dr. Basu Roy will present the interim results of PROJECT PEER, a longitudinal study that follows patients and caregivers for 12 months, with the aim of collecting their stories and experiences to understand the real-world complexities of life with lung cancer. A key finding thus far is that 1 in 5 patients reported financial difficulties associated with treatment. Of those, 61% reported being in debt and 36% reported lacking money to buy basic items like food or clothes due to medical expenses. This study continues to recruit both patients and caregivers.
The three abstracts presented at WCLC 2022 reiterate the importance of integrating the patient and caregiver perspective in both clinical research and healthcare delivery.
LUNGevity's Patient-Focused Research Center (Patient FoRCe) is a bridge to connect patient and caregiver voices with healthcare professionals, regulators, policymakers, and developers of drugs to ensure that their voices are heard and incorporated into decisions.
Through qualitative and quantitative research, Patient FoRCe seeks to uncover gaps in information, misperceptions about patient attitudes, and areas of unmet need. Patient FoRCe then incorporates preferences and experiences of people with lung cancer into healthcare delivery reform and the development of policy, treatments, and research protocols that affect patients with the disease.
Learn more at LUNGevity.org/patientforce.
LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer. The foundation works tirelessly to advance research into early detection and more effective treatments, and to ensure that patients have access to these advances. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity provides information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live better and longer lives.
Comprehensive resources include a medically vetted and patient-centric website, a toll-free HELPLine for support, the International Lung Cancer Survivorship Conference, and an easy-to-use Clinical Trial Finder, among other tools. All of these programs are to achieve our vision—a world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization.
Please visit LUNGevity.org to learn more.
SOURCE LUNGevity Foundation
