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
The interplay of financial toxicity, healthcare team communication, and psychosocial well-being among rural cancer patients and survivors
Financial toxicity is a term that refers to the out-of-pocket costs, lost wages, and debt faced by cancer patients as well as the distress caused by financial strain. New research from Cancer Support Community’s Cancer Experience Registry examines the role of financial toxicity among cancer patients in rural settings and suggests that healthcare team communication may play a key role in helping patients manage the financial impacts of cancer on mental and social health.
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.
Head & Neck Cancer (HNC) survivors experience significant long-term side effects of their treatment, and health-related quality-of-life assessments of HNC survivors are still early in development. This survey captured long-term nutrition impact symptoms, eating problems, psychosocial impact, and barriers to accessing health care of HNC survivors.
The Inflation Reduction Act (IRA) changes how Medicare pays for some prescription drugs. For the first time, the Centers for Medicare & Medicaid Services (CMS) can ask drug companies for lower prices. What is important to patients should be included in a drug’s value. CMS should use data about what patients value when defining a drug’s “clinical benefit.” CMS should also create an ongoing process to include voices of patients and providers in valuing drugs.
CancerSupportSource (CSS), a distress screening and referral program, identifies unmet needs of people with cancer and links them to resources and support. We developed and validated a Spanish-language version (CSS-Spanish) to better serve Hispanic and Latino communities and promote health equity.
The purpose of this study was to describe the type and prevalence of survivorship concerns reported by individuals with metastatic cancer, and their associations with cancer diagnosis, treatment, and socio-demographic variables.
This study describes financial toxicity (FT) reported by people with metastatic cancer, characteristics associated with FT, and associations between FT and compensatory strategies to offset costs.