The number of people of all ages in the U.S. who have cancer is projected to grow from 11.8 million in 2005 to 18.2 million in 2020, a 55% increase.
Despite many remarkable milestones in cancer prevention, early detection, and treatment, many will still experience the catastrophic complications of a cancer diagnosis. With no options, patients and caregivers are thrust on a course that takes them through the cancer experience where they encounter the cognitive, psychosocial, emotional, physical and practical consequences of the disease and its treatment. While the diagnosis of cancer, in and of itself, can be a precursor to significant changes in any or all aspects of a patient’s being, the diagnosis of a brain tumor can lead to a more aggravating experience.
The Center for Quality and Outcomes Research (CQOR) has been established to provide a forum for a multidisciplinary team of patients, caregivers, health providers, scientists, and policy makers to make an impact in reducing the burden of cancer. The need to provide comprehensive, holistic care gains increasing importance as cancer care becomes more complex. Our research explores novel strategies to prevent, identify and manage common symptoms in patients with cancer; measure and enhance quality of life in patients and caregivers; and improve patient and health outcomes.
Our current studies are directed at optimizing seizure prophylaxis (prevention), reducing risks associated with venous thromboembolism (blood clot that forms within a vein), and managing peripheral neuropathies ( damage to or disease affecting nerves) in patients with neurological cancers. Our center also addresses the hidden morbidity (diseased state or symptoms) of cancer treatment – the effect on family caregivers. We believe that caring for caregivers is an important component of comprehensive and holistic clinical care.
Research Clinical Trial: Currently Recruiting
The primary purpose of this pilot study is to evaluate the feasibility and acceptability of a Mobile Digital Solution in monitoring and collecting symptom burden data. The proposed study is meant to be the preparatory work for an intervention study to test the effect of Mobile Digital Solutions on improving patient outcomes by fostering early interventions for symptom relief and support of patient and family caregiver quality of life (QOL).
Digital communication has been shown to affect how patients access and receive information, how they share health data, and how they interpret and make the data useful to stay healthy or when receiving medical treatment. CancerLife, one form of digital communication, is a mobile digital solution that allows patients to broadcast their health status inside a private invitation only group, text, email, and/or publicly in Facebook or Instagram. By doing, so the patient collects his/her own patient-reported outcomes data and then share this data with their doctor or care team.
Demographic information and patient-reported symptoms will be collected from study participants through CancerLife which they can download from their mobile device app store (Android or Apple). Participants will be asked to broadcast their emotional and physical status through a symptom list within the app as well as how that symptom is impacting their quality of life and activities of daily living. This data will be collected inside the application and display in easy to understand pie charts.
Providers can download the study flyer.
If you are interested to learn more about our quality of life and caregiving studies, please contact our Clinical Outcomes Research Scientist, Dr. Marlon Saria.