The National Cancer Patient Experience Survey is now published
Thanks to the Carolyn Morris and others at the NCRI Consumer Liaison Group, Professor Matt Seymour and the NCRN for getting questions about research asked...
Of the 33% of patients who were asked whether they would like to take part in cancer research - 95% were glad to be asked.
Of those who were not asked to take part in research - 53% would like to have been asked.
I believe that these figures clearly illustrate that patients are keen to talk about research, participate in studies and will need information to help. ten years ago only 1 cancer patient in every 27 was taking part in a research study now it is nearer to 1 in every 5 patients.
Now that we have asked these questions of cancer patients we need to be asking other patients about whether they are offered the CHOICE of taking part in research.
However, even for cancer patients it is far from a perfect picture when you look beyond the headline figures.
A more detailed summary of the responses to the research questions...
Discussion of Research
There was a significant variation in the proportion of patients saying that taking part in research had been discussed with them. Scores ranged from 39% (breast cancer) to 15% (urological cancer).
Results from individual Trusts show that there are significant variations in the proportion of patients saying taking part in cancer research was discussed with them. Scores in Trusts ranged from 14% as the lowest score to 62% as the highest Trust score.
The 20th percentile threshold is 24%; the 80th percentile threshold is 37%.
53% of those patients who said they were not asked, said that they would have liked to have been asked; 47% said they would not have liked to have been asked. Findings by Tumour Group There was a significant variation in the proportion of patients saying said that they would have liked to have been asked.
Scores ranged from 64% (brain / CNS) to 47% (skin and urological cancers).
95% of those patients who had research discussed with them said they were glad to have been asked; 5% said they were not.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the differences between cancer groups are not significant overall.
Findings by Trust Results from individual Trusts show that there are significant variations in the proportion of patients saying they were glad to have been asked.
Scores in Trusts ranged from 85% as the lowest score to 100% as the highest Trust score.
The 20th percentile threshold is 93%; the 80th percentile threshold is 97%.
Other key findings from the survey are that patients are:
Given clear answers – 91% (91% in 2010) of patients saying that they received understandable answers to important questions all or most of the time from their Clinical Nurse Specialist;
Treated with dignity – 94% (93% in 2010) of patients saying that they were always given enough privacy when being examined or treated;
Seen quickly – 83% (81% in 2010) of patients feeling they were seen as soon as necessary by a hospital doctor;
Treated with respect – 83% (83% in 2010) of patients feeling they were told sensitively that they had cancer;
Given a choice of treatment – 84% (83% in 2010) of patients being given a choice of different types of cancer treatment before their treatment started.