But just what information is most useful to patients with NETs, and where are the gaps in the educational and supportive resources to which they have access? A study – presented at the Gastrointestinal Cancers Symposium on Jan. 19, in San Francisco – explored just that.
Living with a neuroendocrine tumor (NET) is physically and emotionally challenging, and many who have the disease benefit from various forms of patient education.
But just what information is most useful to them, and where are the gaps in the educational and supportive resources to which they have access? A study — presented at the Gastrointestinal Cancers Symposium on Jan. 19, in San Francisco – explored just that.
Researchers used a survey to investigate the impact that patient education can have on optimizing care and sought to identify currently available resources that address the physical, emotional and informational challenges faced by patients with NETs. The questionnaire also looked for any gaps in the provision of desired educational materials about the condition, which arises most typically in the gastrointestinal or respiratory tracts in neuroendocrine, or hormone-releasing, cells.
The goal of the survey was to learn how to most effectively educate those who have the disease, turning them into empowered patients, said lead author Grace Goldstein, chief operating officer of the Carcinoid Cancer Foundation.
“Because this is a rare disease, when people are seeking a diagnosis or are newly diagnosed and are told they have something called carcinoid cancer or NET, they’ve never even heard of it, so they’re being told they have something very serious but don’t necessarily know where to start,” Goldstein said in an interview with CURE. “Knowing the best places to go (for information) really helps patients not only to find the best treatment options, but to know that they’re not alone, because many have never even met another person with this kind of cancer.”
The 13-question survey was approved by the Carcinoid Cancer Foundation — a nonprofit organization that encourages and supports research and education on carcinoid and related NETs – and was distributed through its various online channels. The survey was completed by 428 U.S. patients over six weeks in 2015. The effort was part of a larger study, which also included distribution of the questionnaire through two similar groups, one in France and one in Germany; another 313 respondents completed the survey in those locations.
Most survey participants in the U.S. had primary tumors in the small intestine (40 percent), lung (13 percent) or pancreas (11 percent), and 66 percent had been diagnosed in the previous five years. Some of the symptoms they faced before diagnosis were diarrhea (47 percent), flushing (45 percent), changes in bowel/bladder habits (37 percent) and persistent pain (30 percent). The patients listed their greatest physical challenges after diagnosis as fatigue (66 percent), diarrhea (48 percent), pain/discomfort (40 percent) and sleep disturbance (35 percent).
Common emotions upon diagnosis, the patients reported, were fear (58 percent), anxiety (53 percent), feeling overwhelmed (50 percent), confusion (39 percent) and sadness (34 percent).
The informational resources they found “very useful” were NET/carcinoid disease awareness websites, disease-specific support groups, Google, discussion forums and governmental/health-authority websites.
The information formats most favored by survey takers included “patients like me” case studies (67 percent), email (59 percent), e-newsletters (56 percent), FAQs (50 percent), short interactive tutorials (32 percent) and “top tips” (31 percent). In the U.S., patients reported a particular preference for information shared digitally, and Goldstein noted that the foundation does largely offer its educational materials in that kind of format.
Information sought, but not as easily found by the patients surveyed, included simple advice on diet, holistic treatment, complementary therapies, where to get the best treatment, pain management and prognosis.
Goldstein said that the foundation does offer online information about foods to avoid when affected by carcinoid syndrome, a group of symptoms that can arise from carcinoid cancers. However, she said, the organization will be glad to add more to its website about nutrition, holistic treatment and complementary therapies.
A main point made by those who took the survey was their need for more simple, focused, easily accessible information that was relevant to their diagnosis and the physical and emotional challenges they were facing.
“In the U.S., patients with NETs face negative emotions and multiple physical challenges that require psychological support/coping strategies, and they seek reliable, personally relevant, easily understood information, including that from interaction with other patients,” the study authors wrote.
By presenting their study results at conferences, Goldstein added, the researchers hope to raise awareness of NETs among health care practitioners, so that they are more likely to recognize the rare condition when they see it. Raising awareness about the disease in the community may help patients identify their own illness if a doctor misses it, she said.
“I feel that knowledge is power, and the more anybody knows about what disease they’re living with, the more they can deal with it in a positive manner and find the best treatment options,” Goldstein said. “Information is what makes empowered patients, and never have I met such proactive people as the patients in this community.”