CSC Publishes New Research Insights Report

July 5, 2023

Survey research makes a real impact by helping us understand the needs of cancer patients, survivors, and caregivers. In a new report, we shed light on our research approach, recent initiatives, and key insights learned about the cancer experience.

By gaining an understanding of the experiences of patients, survivors, and caregivers through research, we aim to enhance cancer careguide program development, and influence health-related policy.  

Research & Training Institute
Cancer Support Community

It is estimated that there will be over 1.9 million new cancer cases in the United States in 2023. With rapid advances in screening and treatment options, navigating care is more complicated than ever. Yet, outside of academic settings, few large data sources exist about quality of life and care experience among people impacted by cancer.

Cancer Support Community’s Research & Training Institute (RTI) is working to elevate the voices of patients, survivors, and caregivers through expansive studies on the psychosocial impact of cancer. 

The RTI has just launched our first comprehensive research report. The report highlights our initiatives from 2020-2023, with a focus on three research approaches:  
1.    Capturing Lived Experiences with Survey Research
2.    Creating New Measures of the Cancer Experience
3.    Examining Real World Impact 

Visit our RTI Report for an in-depth look at each of these approaches ― including how we do our work, why it’s needed, and key learnings. 

By way of introduction, we highlight the three major sections here: 


1. How do we capture lived experiences with survey research? 

One of the key methods that we use to engage people impacted by cancer is survey research. Our surveys are typically completed online and cover a wide range of areas. Our most recent topics include: 

  • Patient experiences with biomarker testing 
  • The impact of the COVID-19 pandemic on cancer patients and survivors 

We also recently redesigned our Cancer Experience Registry (CER) survey to better capture the experiences and needs of those impacted by cancer. The CER is an online research study that uncovers the emotional, physical, practical, and financial impact of cancer. Those who participate in the survey may also be invited to participate in additional surveys that take a closer look at emerging topics in cancer. 


2. How do we create new ways to measure the cancer experience? 

In addition to completing survey research, we also develop validated tools to measure the cancer experience. Thorough consideration is taken when developing these measures to precisely capture the intended concept and to accurately reflect patient and caregiver experiences.  

For example, since 2008 CSC has been developing a program called CancerSupportSource (CSS). CSS is a screening, referral, and follow-up program that measures distress and unmet needs among cancer patients. The program automatically creates reports with information tailored to each patient’s identified concerns, including links to free resources available at CSC partner locations nationwide. The reports also alert clinical staff to patients who are at risk for anxiety and depression. 

To reach as many people as possible who are impacted by cancer, the CSS tool has been adapted into a measure for caregivers and for Spanish-speaking Latino and Hispanic individuals with cancer. The goal is to implement CSS in clinical settings nationwide to help clinicians connect patients and caregivers with appropriate resources and proactively manage cancer-related distress.  

3. How do we examine real-world impact? 

We know that a cancer diagnosis can lead to increased distress. When this distress is unsupported, patients can experience a worse quality of life. Further, when mental health concerns and other needs of patients and caregivers go unmet, healthcare systems face a higher cost and strain due to emergency department visits. By partnering with healthcare providers, we were able to capture data from real-world patients. We discovered that using a distress screening tool helps improve healthcare utilization and care, health-related quality of life, and treatment adherence. 

Survey research makes a real impact by helping us understand the needs of cancer patients and caregivers. That information is used to help validate the need for distress screening at appointments. Distress screening is one of the many ways that research supports the care experience of patients and caregivers.