Scottish Cancer Patient Experience Survey 2015/16

Deciding the best treatment

It's important that patients feel fully informed to be able to make the decision about which treatment, if any, they want to undergo.

As more people are living with cancer than ever before ^[4] , understanding side effects of treatment which may affect them in the future as well as immediately becomes increasingly important.

In this section we seek to understand both the relational aspects of treatment decisions - whether the patients felt involved enough in the decisions about their care - and the processes that support this: whether the treatment options were explained, whether possible side effects (both immediate and future) were communicated, and whether practical advice and support in dealing with the side effects of treatment were offered.

Treatment options

Patients were asked whether their treatment options were explained to them. Thirteen per cent of respondents indicated that there was only one type of treatment suitable for them.

Of the patients with more than one treatment option available, the majority (86%) had their treatment options explained to them 'completely' (Table 12).

There was some variation in responses from different tumour groups. However, statistical tests concluded that these differences as a whole were not significant.

Table 12: Explanation of treatment options

Before your cancer treatment started, were your treatment options explained to you?	n	%
Yes, completely	3,457	86%
Yes, to some extent	483	12%
No	82	2%
Total	4,022	100%

Involvement in decisions about care and treatment

Patients were also asked whether they were involved as much as they wanted to be in decisions about their care and treatment. Over three quarters of patients (78%) were 'definitely' involved as much as they wanted to be (Table 13).

Table 13: Involvement in decisions about care and treatment

Were you involved as much as you wanted to be in decisions about your care and treatment?	n	%
Yes, definitely	3,554	78%
Yes, to some extent	820	18%
No, but I would like to have been more involved	183	4%
Total	4,557	100%

Patients with colorectal / lower gastrointestinal (82%), lung (83%), and skin (87%) tumours were all statistically more positive than the all-cancer average regarding involvement in decisions (Figure 12).

Figure 12: % involved in decisions about care and treatment, by tumour group

Side effects of treatments

Immediate side effects

Patients were asked whether the possible side effects of treatment were explained in a way they could understand.

Five per cent of patients responded that they did not need an explanation. Of those that did need an explanation, the majority (71%) reported side effects 'definitely' being explained in a way that they could understand (Table 14).

Table 14: Explanation of side effects of treatment

Were the possible side effects of treatment(s) explained in a way you could understand?	n	%
Yes, definitely	3,103	71%
Yes, to some extent	1,056	24%
No, side effects were not explained	230	5%
Total	4,389	100%

Responses to this question varied by tumour group, with breast tumour patients being statistically below the all-cancer average (66%) and lung tumour patients being above average (76%) (Figure 13).

Figure 13: % receiving understandable explanation of side effects, by tumour group

Future side effects

Patients were also asked whether they were told about side effects of treatment that could affect them in the future rather than straight away. Seven per cent responded that they did not need an explanation.

Of those that did require explanation, only fifty-three per cent reported that they were 'definitely' told about future side effects (Table 15). This is notably less positive than the question relating to more immediate side-effects being explained (53% and 71% respectively responding positively). One in five patients (19%) did not receive any explanation of future side effects at all.

Table 15: Future side effects of treatment

Before you started your treatment(s), were you also told about any side effects of the treatment that could affect you in the future rather than straight away?	n	%
Yes, definitely	2,178	53%
Yes, to some extent	1,115	27%
No, future side effects were not explained	786	19%
Total	4,079	100%

As with the previous question regarding more immediate side effects, patients with breast tumours (46%) were less likely to be positive than the all cancer average. Patients in the prostate tumour group (62%) were statistically more likely to be positive than the all-cancer average (Figure 14).

Figure 14: % told about future side effects, by tumour group

Practical advice and support for dealing with side effects

Patients were asked whether they were offered any practical advice and support in dealing with side effects of their treatment. Almost one in ten (9%) patients were not offered any practical advice or support (Table 16).

Table 16: Practical advice and support for dealing with side effects

Were you offered practical advice and support in dealing with the side effects of your treatment(s)?	n	%
Yes, definitely	2,814	64%
Yes, to some extent	1,151	26%
No, I was not offered any practical advice or support	407	9%
Total	4,372	100%

Patients with haematological tumours (70%) were most likely to have received practical advice and support for side effects, whilst urological tumour patients (55%) were the only group statistically below the all-cancer average (Figure 15).

Figure 15: % receiving practical advice and support for side effects, by tumour group