Publications & Presentations
The Cancer Support Community is a leader in research on the patient, survivor, and caregiver experience. Our work appears in posters and presentations shared at professional conferences, published articles in preeminent peer-reviewed journals, educational materials for patients and caregivers, and comprehensive research reports to help inform cancer care and patient advocacy.
Use the search filters below to discover our research findings on diverse topics related to patient and caregiver quality of life, including:
- Psychosocial well-being and symptom management
- Patient-provider communication
- Treatment options
- Patient advocacy
- Financial toxicity and other barriers to health equity
- Experiences and perspectives on precision medicine
Meaningful Change in the Ability to Do Activities With Cancer & Cachexia
A research team, including Cancer Support Community, surveyed 181 adults with cancer and cachexia to learn what changes in activity would be meaningful. These findings highlight how researchers can measure patient-centered changes and guide the development of new treatments.
CAR T patients and caregivers had significant unmet needs that could become barriers to care, especially those who had not yet been approved for treatment and were not yet eligible for a specific pharmaceutical company’s Patient Assistance Program. Using a proactive model of navigation to provide education and resources to patients and caregivers has allowed CSC to identify some of the key psychosocial and practical
barriers to care for the CAR T population.
Cancer Support Community’s (CSC) CAR T Navigation Program is an innovative practice initiative for which social workers take the lead and work alongside patients and caregivers to navigate systems of care, provide essential resources and offer ongoing support.
Young adults with cancer face unique and complex challenges that are often overlooked in the broader cancer care landscape. This study analyzes the impact of Cancer Transitions: Moving Beyond Treatment® for Young Adults program (CTYA) and its efficacy in providing relevant and beneficial psychosocial education and support for YAs transitioning into post-treatment survivorship.
Hematologic malignancies (HM) often require treatments that carry numerous adverse effects, high costs, and long travel requirements. Current assessments of HM treatment tolerability focus mainly on physical side effects and may overlook other factors that influence patients’ experiences. This study aims to further understand patients’ perceptions of HM cancer treatment tolerability and investigate how these perceptions may be related to income.
Treatment adherence is a critical part of effective cancer care, and it can be influenced by how well patients tolerate treatment. Traditional definitions of tolerability focus on managing adverse events but often overlook the patient’s perspective and quality of life. This study aims to better understand breast cancer patients’ perceptions of treatment tolerability by metastatic status and its association with adherence.
Treating lung cancer requires complex decision making, highlighting a critical need for patient-centered communication. The aim of this study was to understand how patient-centered communication may influence knowledge and preparedness among patients with lung cancer when making treatment decisions.
This qualitative study conducted 20 semi-structured interviews with stage III and IV OC patients to assess their experiences seeking support for sleep disturbance and fatigue, including any barriers to and unmet needs with care.
This study evaluated how patients rate their sleep disturbance and fatigue levels at different points in their treatment trajectory.
Nutrition and eating behaviors can have a critical influence on mental health and quality of life. This study characterizes how individuals with breast cancer may experience nutrition-related professional support, in terms of access and impact on quality of life.
Despite increased recognition of biomarker testing's importance in treatment for AML and CML, there are still many areas of unmet need in patients' understanding of biomarker testing and its implications. This study sheds light on these unmet needs and describes patients' current knowledge of biomarker testing.