Extending our learning and teaching

On February 23, 24, and 25, 2012, we were honored to take part in the 9th Annual Conference of the American Psychosocial Oncology Society (APOS) in Miami, FL.  The conference theme was:Reducing Health Disparities in Quality Cancer Care: Psychosocial Research, Practice, and Outreach.

We were excited to hear Bruce Rapkin, PhD, as the keynote speaker during the opening session where he stressed the importance of engaging the community as partners in developing new, evidence-based programs.  This approach ties in directly with methods we use at the Cancer Support Community ’s (CSC) Research & Training Institute.  At the Research and Training Institute we strive to partner with stakeholders in communities, including patients, community-based organizations, and academic leaders as equal partners to develop meaningful and innovative programs.

At APOS, Dr. Mitch Golant and I were honored to present the poster entitled: Problem Related Distress and Quality of Life in Cancer Survivors  Working with the community, CSC tested items from a distress screening tool using an automated tablet format.  We learned that we could screen for problems related to distress and quality of life over time among patients being treated in community settings.  This is important since 85% of cancer patients are treated in a community setting outside of an academic cancer center.  This is also the first time this screening tool has been validated for use in the community.

Building on these findings, CSC has developed a web-based, cancer distress screening tool, CancerSupportSource™ (CSS). CSS allows providers to rapidly screen and address patient distress needs as well as being able to share and report information across healthcare system (in an anonymous way). CSS combines institutional and community resources to provide personalized psychosocial support aimed at improving overall quality of care, patient satisfaction and institutional efficiency.

We were also thrilled to present out findings from The Breast Cancer M.A.P. (Mind Affects The Physical) Project, an online registry and annual report that focuses on the social and emotional needs and experiences of breast cancer survivors in the U.S. and around the world.  An example of 1 finding from the report is that more than 21% of the survivors in our registry reported that sexual function was a severe to very severe problem and related these problems to their cancer diagnosis and treatment.  Related to this finding is that participants with depression were nearly three times more likely than those without depression to rate sexual function as a severe or very severe problem.   Of interest is that M.A.P. participants on average were 5 ½  years out from diagnosis, suggesting that these distress-related problems persist well into survivorship.  These data highlight the need for all survivors throughout the survivorship continuum to be screened for distress-related problems with sexual function and be provided with appropriate referrals and follow-up, especially because there are so many educational and support interventions that can help improve the quality of life of these breast cancer survivors.

No one should have to face cancer alone, and no treatment plan is complete without emotional and social support.  We encourage anyone affected by cancer to learn more about the Cancer Support Community and help change the cancer experience for the millions who face it every day.  Here you can also gain access to resources and opportunities to connect with others through our online community and CSC’s broad network of community-based support.


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