New data from an Internet-based study show that patients with head and neck cancers (HNC) may be at risk for significant late effects after their treatment, but they're unlikely to discuss these and other survivorship care issues with their doctors. The findings, from researchers at the Perelman School of Medicine at the University of Pennsylvania, will be presented Monday, June 4, at the 2012 American Society of Clinical Oncology (ASCO) meeting in Chicago. The research team says the study reinforces the need to improve survivorship care for patients as they complete their active treatment, better educate patients about late effects they may experience, and encourage them to report these problems to their healthcare providers so they can be addressed.

Data from nearly 4,000 cancer survivors were gathered between April 2010 and October 2011 via patients who completed LIVESTRONG Care Plans via OncoLink, Penn Medicine's online cancer resource. Approximately four percent of those patients had been treated for a primary head or neck cancer. Of those, nearly 88 percent reported having undergone radiation, 73 percent surgery, and 67 percent chemotherapy. Many patients reported late effects such as difficulty swallowing/speaking (83 percent), decreased saliva production (88 percent), thyroid problems (33 percent), decreased neck mobility (60 percent), concerns regarding cognitive function (53 percent), or vision deficits. However, since results show that patients only discuss the survivorship care plans they created on the site with their healthcare providers in 55 percent of cases, the researchers are concerned that many of these symptoms are not being reported or treated. The most common reasons for patients not sharing their survivorship care plans with healthcare providers were, "I did not think they would care," and "I did not want to upset or anger them."

"The fact that only about half of patients who create care plans are discussing them with physicians indicates a need for further development of patient counseling and survivorship care so we can deliver higher quality care to cancer survivors of all kinds," says lead author Christine E. Hill-Kayser, MD, an assistant professor of Radiation Oncology in the Perelman School of Medicine. "Our study indicates that as many as 45 percent of these late effects are going unreported, so it's possible that HNC patients may be at a higher risk for post-treatment side effects than we thought. But without understanding the true incidence of these problems, we can't properly screen for these problems or intervene to help patients when they develop them."

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