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Demystifying Distress Screening

Monday, March 26, 2018

Whether you are familiar with the phrase distress screening or are seeing it for the first time, the results we are sharing will show how important this tool is for patients diagnosed with cancer.

Let’s Talk About Chronic Myeloid Leukemia

Friday, November 17, 2017

Recognizing the the unique needs of Chronic Myeloid Leukemia patients, the Cancer Support Community (CSC) education team utilized CML specific information from CSC’s Cancer Experience Registry to create the CML Discussion Tool.

Five Reasons to Join the Cancer Experience Registry

Wednesday, August 9, 2017

The Cancer Support Community's Research and Training Institute provides a unique and explorative opportunity for people to share their personal experiences with cancer through The Cancer Experience Registry. The Registry collects stories and creates a collection of patient voices to exchange information and resources. It helps connect people touched by cancer, and it uses information from participants to learn more about what quality of life means to patients. By being a part of the Registry, all cancer patients—at any point of their cancer journey—and caregivers can contribute to the cancer community.

New Research Presented by CSC at ASCO 2017

Thursday, June 8, 2017

The Cancer Support Community was honored to return to ASCO and we did not come empty-handed. Armed with three abstracts and one poster presentation, CSC’s Research and Training Institute (RTI) team was ready to share our research with the oncology community. Through the Cancer Experience Registry®, the RTI has collected data from over 11,000 cancer patients and caregivers—with every type of cancer represented.

Challenges for Cancer Patients: Costs, Delays, and Conversations

Thursday, March 9, 2017

The Cancer Support Community did a study in late 2016 to explore this question and found that people with cancer face challenges with costs and delays in health care. The study asked participants about their access to insurance, services, and providers, and direct and indirect costs of treatment. By surveying over 1,200 participants who currently have, or have had cancer, we found that a significant number of cancer patients have to skip out on some health care services or prescriptions due to high out-of-pocket costs. Also, cost of treatment is not always discussed between doctors and patients, so many cancer patients go into treatment without knowing what they will have to pay for their care.

Meeting the needs of caregivers (and patients) affected by lung cancer

Wednesday, January 4, 2017

Caregivers play a critical role in the treatment, support, and recovery of individuals with cancer, yet often times, their emotional and informational needs get overlooked. Caregivers have such a meaningful role in cancer care, and it is important to recognize and address their needs. These needs vary based on the health of the care-recipient, the physical and emotion needs of the recipient, the resources of and the demands on the caregiver, as well as the family or relationship dynamics.

Experiences of Melanoma Patients and Caregivers

Wednesday, December 14, 2016

The Cancer Support Community constantly strives to better understand the experiences of patients and caregivers to best meet their needs. Often we conduct in-depth surveys on specific concerns or cancer diagnoses when we are considering adding or modifying programs. This past spring, we conducted such a survey of individuals (both patients and caregivers) affected by melanoma. We, along with partner organizations, conducted an online survey of 140 individuals diagnosed with melanoma and 64 caregivers assessing experiences, beliefs, attitudes, preferences for information and support.

Understanding Clinical Trials

Thursday, December 8, 2016

Clinical trials can offer cancer patients access to the most innovative treatments, high levels of care and hope for a better future. Yet, fewer than 5% of adults with cancer participate in clinical trials. One year ago, the Cancer Support Community (CSC) created an online survey focused on cancer clinical trials with the goal of using the information to design an educational program. Results from this survey highlighting the experiences, beliefs, and preferences of cancer patients as they relate to clinical trials were published in a report that is now available to the public.

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