A survey of patients in the United Kingdom who were diagnosed with cancer found that patients with blood cancers were the least likely to say they completely understood what was wrong when the doctor explained it. They were also less likely to say that their treatment options were explained before treatment started compared with patients with other cancers.
Patients diagnosed with a blood cancer were significantly less likely than patients diagnosed with other cancers to say they completely understood what was wrong when it was explained to them, according to data from the United Kingdom’s 2017 National Cancer Patient Experience Survey.
Only 59% of patients with a hematological cancer completely understood the doctor’s explanation, which was significantly lower than the 73% average for all patients with cancer. In addition, 4% left with no understanding of what they were facing. In comparison, 80% of patients with skin cancer said they completely understood their doctor’s explanation and only 1.2% admitted they did not understand what they were told.
“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 statement. “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.”
Among all patients surveyed, 85% said that the way they were told they had cancer was done sensitively. In addition, 79% said they were definitely involved as much as they wanted to be in decisions regarding their care and treatment.
Patients with hematological malignancies were also less likely to say that their treatment options were explained before treatment started (69.4%) compared with the average (73.8%). Overall, only half of all patients with cancer said that before they started treatment they were definitely told about side effects that might not affect them immediately but could appear in the future. Of patients who had hematological malignancies, only 46.4% said they were told about these side effects before treatment and 17.4% said no future side effects were explained.
“Blood cancer is a complicated disease that is less understood than some of the other common types of cancer,” Porch said. “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.”
In general, patients in England who had cancer were positive about the care they experienced. On a scale of 0 (very poor) to 10 (very good), respondents rated care an average of 8.8. Of the 52 questions asked year to year, there was a significant decrease in the score of just 1: do you think the general practitioners and nurses at your general practice did everything they could to support you while you were having cancer treatment? This question has received successively lower scores since the 2015 survey.