Cancer Support Community’s Cancer Experience Registry: Its Purpose, Value, and Need of Navigator Support

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Cancer Support Community’s Cancer Experience Registry: Its Purpose, Value, and Need of Navigator Support

Oncology nurse navigators work to improve outcomes for individuals with cancer by educating patients, providing support, and finding solutions to numerous access-to-care challenges. In a given day, we deal with each individual’s financial, psychological, and social aspects of care, as well as issues related to communications with the oncology team. Although patients have unique challenges, often the lack of a resource, policy, or healthcare system solution that would work for most is all too apparent.

The Cancer Support Community (CSC) has created a forum for recording both individual cancer patient voices as well as the collective experience of patients, survivors, and caregivers. It’s called the Cancer Experience Registry, and it provides the cancer community with the opportunity to follow aggregated patient and caregiver experiences over time, and to analyze data across cancer types, with an eye toward improving care and outcomes.

The CSC is the largest professionally led nonprofit network of cancer support worldwide. Its mission is to ensure that all people affected by cancer are empowered by knowledge, strengthened by action, and sustained by the community. CSC delivers education, support services, and tools for all people affected by cancer and conducts advocacy and research initiatives (www.cancersupportcommunity.org).

CSC is also the home of the Research and Training Institute (RTI), a first-of-its-kind endeavor, dedicated to studying the psychosocial and behavioral effects of cancer. The Cancer Experience Registry is a key initiative of the RTI, created to better understand the emotional and social aspects of living with cancer for patients and caregivers. Registry participants answer questions about the emotional aspects of treatment decision-making; stress around the cost of cancer care; the impact of treatment side effects; the effects on family, friends, and work; gaps in support services; degree of satisfaction in communicating with healthcare providers; what they wish they knew from the start; what they would like other patients and caregivers to know; and the uncertainty of living with a cancer diagnosis.

The Registry was launched in 2013 and now has more than 9000 patient and caregiver participants. Individuals with a cancer diagnosis and their caregivers can join at any stage of their journey. It is free and confidential. There’s a general Registry for all cancer patients and specific programs for metastatic breast cancer, multiple myeloma, chronic myeloid leukemia, lung cancer, chronic lymphocytic leukemia, prostate cancer, melanoma, stomach cancer, and gastroesophageal junction. There’s also a Registry for caregivers. The various Registry surveys are created with the help of advisory groups that include patients, clinicians, psychosocial and medical researchers, patient advocates, and industry.

When patients and caregivers join the Registry, they have the chance to share their experiences and help improve quality of life for themselves and others. Patterns and insights emerge through their contributions that will help the cancer community better address the social, emotional, and financial challenges of a cancer diagnosis. Most participants use the web-based tool, but paper surveys are also available for individuals without online access. The web-based tool also shows participants how others have responded to specific sections of the survey.

CSC is committed to sharing data with the cancer community. The RTI team collaborates with advisors, clinicians, and researchers to analyze and report Registry data and findings, and welcomes your interest in collaborating on both Registry outreach and data dissemination. Registry findings have been presented at the American Society of Clinical Oncology annual and special meetings, the American Society of Hematology annual meeting, the American Psychosocial Oncology Society annual meeting, and others. See more about abstracts, presentations, and publications at www.cancersupportcommunity.org/publications-presentations.

Please contact Joanne Buzaglo, Senior Vice President of CSC’s RTI, if you are interested in getting involved with the Registry as an advisor or coauthor.

You can visit www.cancersupportcommunity.org for more information about how the Registry benefits patients and professionals and view videos explaining the Registry at www.cancersupportcommunity.org/our-research/research-training-institute#tab3.

The more people who participate in the Registry, the more information the cancer community will have to address the emotional and social aspects of living with cancer. Please encourage your patients and their caregivers to participate in the Registry. Share this information with your colleagues and your social network. And please join the Registry if you have experience to share as a cancer survivor or caregiver.

Easy registration information for patients and caregivers is at www.cancerexperienceregistry.org/join-cancer-experience-registry.

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