Most Blood Cancer Patients Don’t Fully Understand Their Diagnosis, Survey in England Reveals

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by Alice Melão |

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Among those with blood cancers — including myeloma, lymphoma, and leukemia — only 59% fully understand their diagnosis, data from England’s National Cancer Patient Experience Survey reveals.

The figure is much lower than the average for other cancer patients, where nearly three in four (73%) say they completely understood their diagnosis.

“Being told that you have cancer can be one of the most devastating experiences of a person’s life, and it is vital that people understand what they are being told,” Sarah Porch, head of information and support services at Bloodwise, said in a press release. Bloodwise is the U.K. charity formerly known as Leukaemia & Lymphoma Research.

“If people do not understand their diagnosis, then they are not in a position to ask informed questions about their condition or to explain their disease to their loved ones. This is why it is deeply worrying that only 6 out of 10 people with blood cancer come away from their diagnosis fully understanding what is wrong with them,” she added.

Conducted since 2010, the National Cancer Patient Experience Survey was designed to monitor the progress of England’s National Health System (NHS) on cancer care and provide insightful information on how to improve it. The survey also aims to gather information on the work of various charities and stakeholder groups supporting cancer patients.

The 2017 survey included 69,072 cancer patients, aged 16 or older, who received their treatment at an NHS Trust center during the months of April, May, and June 2017. Participants were asked to complete a 59-item questionnaire, either online or through mail.

Overall, only 1.8% of all cancer patients left the doctor’s office not understanding their diagnosis at all, and 73% said they fully understood their diagnosis.

Skin, prostate, and colorectal cancer patients were most likely to understand their diagnosis, with 80%, 78.5%, and 78.3% of the respondents, respectively, reporting they completely understood the explanation they were given.

However, among the 11,617 patients with blood cancers, only 59% understood their diagnosis. One in 25 (4%) didn’t understand the diagnosis at all, and 36.4% said they understood only a part of what they were told.

“Blood cancer is a complicated disease that is less understood than some of the other common types of cancer. So it’s important to look at ways to improve how this information is explained to make it as understandable as possible, as well as making sure that everyone is also offered written information about their cancer,” said Porch.