Cancer Support Community: Empowering Patients through Knowledge and Psychosocial Care
Los Angeles, CA—The advocacy community’s goal of patient-centered cancer care has evolved substantially over the past decade, said Kim Thiboldeaux, President and Chief Executive Officer of the Cancer Support Community (CSC), Washington, DC.
At the Fourth Annual Conference of the Association for Value-Based Cancer Care, Ms Thiboldeaux outlined a variety of important services and capabilities of the CSC, a global nonprofit advocacy group dedicated to providing support, education, and hope to people affected by cancer.
In 2009, the headquarters office of The Wellness Community and Gilda’s Club joined forces to become the CSC, one of the largest providers of social and emotional support worldwide. The union was prompted by the Institute of Medicine report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”
“I think that we have made, over the past decade or so, very significant progress in this idea of patient-centered care.” As examples, she cited psychosocial care and distress screening now included in national cancer quality initiatives, and the establishment of cancer support communities inside hospitals at the behest of the hospitals, Ms Thiboldeaux said.
“Cancer Support Community is leading a movement to ensure that psychosocial care is integrated into the medical standard of care for people with cancer, that it is embraced, that it is mandated, and that it is reimbursed,” Ms Thiboldeaux said.
One tool the research institute at the CSC developed is a distress screening tool called “CancerSupportSource,” which is an electronic web-based tool with 2 validated versions, available in English and Spanish.
“It is not just a screening tool,” said Ms Thiboldeaux, but rather a comprehensive screening program “where we get at the heart of some of the psychosocial issues that patients are concerned about, and ask them how they would like to help, and how we can help to create a care plan for them.”
The CSC is working with the Community Oncology Alliance and other centers to ensure the integration of distress screening and psychosocial care into oncology medical homes.
“We have several hundred trained licensed mental health professionals who work with our centers around the country, work on the helpline, and run the online community and online support groups,” Ms Thiboldeaux said.
“Last year, we opened a full Cancer Support Community inside of Greenville Hospital in Greenville, South Carolina,” she said, in addition to centers inside the University of Florida and the Orlando Cancer Center. Hospitals are attracted not only to the distress screening program, but also to the entire evidence-based turnkey model of support.
“We have worked very closely with the American College of Surgeons on the development and implementation of their patient-centered standards; now there are 1400 plus hospitals around the US who are accredited by the commission who must start doing distress screening, doing navigation, doing survivor care planning,” said Ms Thiboldeaux.
Each year, more than $45 million in free support services are provided to patients and families through this service. The helpline offers “on-the-spot” counseling. Online support groups, chat boards, and bulletin boards are part of a vibrant online community.
Its second line of service is behavioral and psychosocial research. As a third line of service, “we’re also fighting on the policy side to do more to make sure that psychosocial services are reimbursed for the hospitals and practices,” Ms Thiboldeaux said.
In 2013, the Community launched the Cancer Policy Institute. “We hired a very skilled policy and advocacy team in Washington, and we’re really uniting our patient voice along with the data from our research institute to create system change in Washington,” she said.
In addition to studying the quality-of-life benefit of distress screening, the program’s ability to save money is also being evaluated.
The CSC works with small practices that refer patients to its helpline to connect patients with social workers in the network.
Empowering Patients through Knowledge
“At the Cancer Support Community, our mission is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community,” said Ms Thiboldeaux.
The screening program is compliant with the regulations of the Health Insurance Portability and Accountability Act and provides customized reports to patients and providers. It provides real-time reports for the patient and the oncology team, and empowers patients to report their concerns and the type of support they need.
Another program initiated by CSC is Open to Options, which helps patients with cancer in their decision-making. “We really help patients insert their own values, their own priorities, take their own realities into consideration when developing their questions around what decision to go with. We’ve had patients call about mastectomy versus lumpectomy—a whole list of issues,” Ms Thiboldeaux said.
Open to Options also informs patients about clinical trials and seeks to clear up any misconceptions patients may have about participating in a trial.
A cancer experience registry has also been developed, and now includes 7000 patients across a multitude of cancer diagnoses. The metastatic breast cancer registry contains data from 450 patients, who have expressed concern about finding childcare and the burden that copays create, for example.