The Raymond Foundation, Central Square, NY
Background: Gastrointestinal (GI) cancers are the most common and deadliest type of cancer in the United States. Understanding the need for increased GI cancer patient education, the GI Cancers Alliance created an online unmet needs survey with goals that included: determining gaps in support services, better understanding needs in patient education, and gaining insight into psychosocial concerns. Methods: 507 GI cancer survivors completed the anonymous survey. The qualitative/quantitative survey was open for a 6 week period during October & November 2016. Survey respondents reported being diagnosed with one of the following GI cancer primary tumor types: Esophagus (6%), Liver (8%), Bile Duct (7%), Pancreas (6%), Gallbladder (2%), Stomach (16%), Ileum (3%), Appendix (3%), GI Carcinoid Tumor (2%), Colon (25%), Rectum (13%), Anus (6%), Did not know primary location (3%). Results: Of the 507 respondents, 84% of patients/survivors reported difficulty adjusting to a new normal as a GI cancer survivor. 59% reported they did not have adequate support (family, friends, professional, spiritual or thru advocacy organizations) to help cope with their diagnosis. Anxiety (67%), Fear (66%) and Depression (59%) were common emotions reported during the cancer continuum. Less than half (40%) of respondents described themselves as empowered patients, comfortable advocating for themselves regarding their healthcare and treatment decisions. 92% of patients surveyed did not have a Survivorship Care Plan (SCP). More than half (52%) of all respondents had not heard of or didn’t know the purpose of having a SCP. Conclusions: Our data underscores the unmet needs of GI cancer survivors, including gaps in support services and patient education. As an initial step to help meet these needs, we created a customizable SCP specific to GI cancers and will launch an online GI Cancer Resource Library. Future directions include systematic distribution of the SCP and continued expansion of GI cancer education and empowerment initiatives.
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Abstract Disclosures
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