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.
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.
Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source‐Caregiver.
This study examined how cancer-related concerns are linked to anxiety and depression in older adults with cancer and whether support from different providers affects these relationships.
This study assessed the experiences and perspectives of Latinos living with cancer when accessing psychosocial support among a sample of Mexican-born, Spanish-speaking patients and survivors residing in the U.S.
This program overcomes barriers to access, including practical, financial, and emotional support needs. Patients and caregivers also received assistance preparing for treatment and coping with symptom burden. For patients who had not yet been approved for therapy, navigators helped find necessary resources and connected them with the treatment team to provide continuity and an extra layer of support. During treatment, navigators checked in on caregivers and assessed additional support needs.
CancerSupportSource (CSS) is a distress screening tool used to identify unmet needs among people with cancer. We developed and validated a version of CSS for caregivers of people with cancer, CancerSupportSource-Caregiver, which identifies concerns among caregivers, related to their own needs and the needs of those for whom they provide care.