Scottish Cancer Patient Experience Survey 2015/16

Finding out what was wrong

Finding out you have cancer can be a daunting experience.

In this set of questions we seek to understand how patients felt about the way their diagnosis was communicated to them: if they felt it was done in a sensitive way, if they were told they could bring a family member with them, if they understood the explanation, and if they were given clear written information.

Bringing a friend or family member

Twelve per cent of patients were either told that they had cancer by telephone or letter, or did not feel it was necessary to bring a family member with them to their diagnosis.

Of the patients who would have liked to bring a family member to their diagnosis, over a quarter (28%) were not told that they could bring someone with them to the appointment where they were told that they had cancer (Table 8).

Table 8: Bringing a family member or friend to cancer diagnosis

When you were first told that you had cancer, had you been told you could bring a family member or friend with you?	n	%
Yes	2,819	72%
No	1,076	28%
Total	3,895	100%

There was variation amongst those in different tumour groups. Patients with brain / central nervous system (90%), colorectal / lower gastrointestinal (80%), and prostate tumours (77%) were all statistically more likely to have been told they could bring a family member or friend than the all-cancer average. Patients with gynaecological (57%), head and neck (66%) urological (63%) and skin tumours (55%) were less likely to have been told this (Figure 8).

Figure 8: % told they could bring family member/friend to diagnosis, by tumour group

Sensitivity of cancer diagnosis

The majority of cancer patients (86%) reported being told they had cancer in a sensitive way. One in twenty felt that it should have been done 'a lot more' sensitively (Table 9).

Table 9: Sensitivity of cancer diagnosis

How do you feel about the way you were told you had cancer?	n	%
It was done sensitively	4,021	86%
It should have been done a bit more sensitively	425	9%
It should have been done a lot more sensitively	229	5%
Total	4,675	100%

Patients with breast tumours (89%) were the only group to respond statistically more positively than the all-cancer average. Upper gastrointestinal (80%) and urological (79%) were both statistically below average on this question (Figure 9).

Figure 9: % told they had cancer sensitively, by tumour group

Understanding cancer diagnosis

A quarter of patients (25%) did not fully understand the explanation of what was wrong with them. Most of these respondents understood 'some of it' (Table 10).

Table 10: Explanation of what was wrong with the patient

Did you understand the explanation of what was wrong with you?	n	%
Yes, I completely understood it	3,603	75%
Yes, I understood some of it	1,084	23%
No, I did not understand it	93	2%
Total	4,780	100%

Patients with colorectal / lower gastrointestinal (82%) and prostate (80%) tumours were statistically more likely to have 'completely' understood the explanation of what was wrong with them than the average. Haematological patients were less likely to have understood 'completely' (60%) (Figure 10).

Figure 10: % understanding explanation of what was wrong, by tumour group

Written information following diagnosis

In a third of cases no written information about the type of cancer they had was given to the patient when they received their cancer diagnosis (Table 11).

Table 11: Written information about type of cancer

When you were told you had cancer, were you given written information about the type of cancer you had?	n	%
Yes, and it was easy to understand	2,310	60%
Yes, but it was difficult to understand	247	6%
No, I was not given written information about the type of cancer I had	1,263	33%
Total	3,820	100%

Of the patients that did receive written information, 90 per cent found it easy to understand

There was significant variation in the percentage of patients receiving written information following diagnosis. Tumour groups that were statistically less likely to receive this information included patients with upper gastrointestinal (48% received no written information) and urological (44% received no written information) (Figure 11).

Figure 11: % receiving no written information about their type of cancer, by tumour group