Cachexia, also known as wasting syndrome, affects approximately 9 million patients globally. The disease can impact patients with common chronic illnesses, including cancer. Cachexia is rarely diagnosed though ~80% of patients with advanced cancers will develop cachexia. Although patients are unfamiliar with the term and the idea that cachexia is a separate syndrome from cancer, when they experience symptoms associated with cachexia, it significantly impacts both quality of life and outcomes for patients and their families. Failed communication between patients and their health care teams, stemming from a lack of education and awareness of cachexia and its impact, are significant barriers to receiving an accurate, timely diagnosis. This symposium will highlight a patient’s journey revealing missed opportunities for physician-patient engagement and communication about symptoms that precipitated lack of diagnosis and management of cachexia. There remains much to be done to address this unmet need, including educating clinicians, patients, and other stakeholders; and enhancing communication to accelerate progress in achieving diagnostic excellence at point of care.
At the conclusion of this session, participants will be able to:
- Define cachexia as a multifactorial syndrome characterized by loss of appetite, weight, and skeletal muscle
- Identify common signs and symptoms of cachexia, including fatigue, functional impairment, increased treatment-related toxicity, poor quality of life, and reduced survival
- Recognize significant psychosocial impacts of cachexia on patients and the significant distress it can cause their loved ones
- Consider ways to improve education, awareness, and patient-provider conversations about cachexia, its symptoms and psychosocial impacts, including using patient-friendly, plain language terms
Claire SaxtonVice President, Patient ExperienceCancer Support Community
Claire’s current role at the Cancer Support Community (CSC) focuses on sharing CSC’s patient insights externally and ensuring the patient experience remains central to all that CSC does. Prior to becoming VP of Patient Experience, Claire led CSC’s national patient education and outreach efforts for 5 years. The award-winning Frankly Speaking About Cancer education programs were co-created with cancer patients & caregivers. Programs were culturally-adapted to meet the needs of specific populations and speakers of multiple languages and produced in a variety of print, digital, and in-person formats.
Claire came to CSC from the Urology Care Foundation, where she managed national patient education programs and disease awareness campaigns with partners including the National Football League. As Executive Director of the Bladder Cancer Advocacy Network, Claire developed the first National Bladder Cancer Awareness Day. While the Executive Director of the Breast Cancer Resource Center in Austin, Texas, she doubled their patient advocacy and outreach programs. Claire began her work in health advocacy while part of the team that opened the National Domestic Violence Hotline in 1996.
Claire holds an MBA from the University of Oregon and an undergraduate degree from Rice University.
Richard F. Dunne, MD, MSAssociate Professor of Medicine
Leader, Gastrointestinal Cancer Unit and Clinical Research ProgramWilmot Cancer Institute
Division of Hematology/Oncology
University of Rochester Medical Center
Dr. Richard Dunne is an Associate Professor of Medicine and the Leader of the Gastrointestinal Oncology Cancer Unit and Clinical Research Program at the Wilmot Cancer Institute and University of Rochester Medical Center. He is a medical oncologist who specializes in the treatment and care of patients with Gastrointestinal Cancers. Dr. Dunne’s research focuses on conducting clinical trials evaluating novel interventions for GI cancers like pancreatic cancer as well as developing a better understanding of how to diagnose and treat cancer cachexia.
Carole Motycka-ManciniCo-Founder/CEOBLUEM Inc.Patient Experience ExpertSurvivor Stage IV Colorectal Cancer/Care Partner to Mike Mancini Stage IV Cancer patient
Carole Motycka is a Stage IV Colorectal Cancer and Living Donor Liver transplant survivor. Motycka is the mother of 4 sons, she is originally from Ohio and attended The Ohio State University. She currently resides in Connecticut and is a middle school special education teacher. She is a co-founder of BLUEM and she currently serves as the CEO.
Carole is active with Fight CRC where she served as a 2020-21 Ambassador and is a mentor/facilitator for their Call-On-Congress legislative advocacy event and created The Mike Mancini HERO Program with the organization. She serves on the board of The Colon Club, whom she represented as a 2020 OneTheRISE Magazine survivor model. She also serves as an ambassador for The Global Colon Cancer Associations 2021-2022 Hereditary/Biomarker program. Carole has served on patient advisory panels for both Pfizer and Bayer and she is a member of the Pfizer Early-Onset Colorectal Cancer and Cachexia Advisory council. She is also a member of the Edward J. DeBartolo Young-Onset Colorectal cancer patient advisory board at The Cleveland Clinic. Her specialties are connecting and advocation on behalf of current patients for equity in access to opportunities, education, and prevention. She has strong connections to patient advocacy organizations and continues to build relationships to create better outcomes for those who are diagnosed especially in the EAO(Y)-CRC group. She speaks of her experiences publicly and shares her story openly to save lives by raising awareness for early age diagnosis and breaking down barriers to access to care and health equity for all patients.
Ann-Marie Richard, PhDDirector/Patient Engagement LeadInternal Medicine Research Unit
Ann-Marie Richard is Director and Patient engagement Lead in the Internal Medicine Research Unit at Pfizer. In this role, she serves as the bridge between patients and researchers, ensuring that researchers are listening and learning from patients at every stage of the drug development process and that patients’ perspectives, needs and preferences are taken into account as novel therapies are being developed to improve outcomes for them and their families.