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INTRODUCTION: The Exceptional Responders Initiative (ERI) at the National Cancer Institute attempts to correlate unusually good outcomes in patients with cancer with genetic targets in tumors and the therapies the patients received. It is not known if other factors might contribute to exceptional responses or outcomes. We explored aspects of the medical history, lifestyle changes, complementary and alternative medicine (CAM) use and communication between health care practitioners and patients who experienced an exceptional response following cancer treatment. METHODS: All subjects whose case was submitted to the ERI were eligible to participate in the survey. A 121-question survey questionnaire was developed to assess aspects of the subject's past medical history, lifestyle (e.g., diet, exercise, spirituality) and use of CAM. RESULTS: Thirty subjects completed and returned the questionnaire from approximately 88 patients invited to participate (approximate response rate = 34%). Approximately 68% were female and 32% were male. Fifty percent of subjects changed their diet after their cancer diagnosis. Eighteen patients (60%) reported using a CAM therapy (not including oral vitamins/minerals or spiritual practices) during their Exceptional Response (ER). CONCLUSION: Multiple factors, including features of the tumor itself, the patient, or the environment, could affect tumor response or patient survival, either solely or in combination with the treatments received. Many patients use other medications, change their diet or physical activity or use CAM interventions after their cancer diagnosis. Investigators attempting to understand the exceptional response phenomenon should acquire rich data sets of their subjects that include information about these factors.
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BACKGROUND: Complementary and alternative medicine (CAM) is often used by cancer patients and survivors in the US. Many people turn to the internet as their first source of information. Health information seeking through the internet can be useful for patients to gain a better understanding of specific CAM treatments to discuss with their healthcare team, but only if the information is comprehensive, high quality, and reliable. The aim of this article is to examine the content, writing/vetting processes, and visibility of cancer CAM online informational resources. METHODS: Online CAM resources were identified by Google and PubMed searches, literature reviews, and through sources listed on various websites. The websites were analyzed through a modified online health information evaluation tool, DISCERN (score range = 1-5). The website's features relevant to the quality assessment were described. RESULTS: Eleven CAM websites were chosen for analysis. The DISCERN analysis showed a range of quality scores from 3.6 to 4.9. Lower DISCERN scores were generally due to deficiencies in describing the writing, editing, and updating processes. A lack of transparency with authorship and references was commonly present. CONCLUSION: Cancer patients interested in CAM need unbiased, evidence-based, reliable, high-quality, easily accessible educational materials. Individuals should use the guidelines followed in this analysis (including DISCERN and Medline Plus) to find reliable sources. Website developers can use CAM Cancer (NAFKAM), Beyond Conventional Cancer Therapies, Memorial Sloan Kettering Cancer Center, breastcancer.org, Office of Dietary Supplements, National Center for Complementary and Integrative Health, and Cancer.gov as models for trustworthy content.
