Scottish Cancer Patient Experience Survey 2015/16: Analysis of Free-text Comments
Analysis of free-text comments provided by patients as part of Scotland’s first Cancer Patient Experience Survey.
Methods
Design and Participants
This report relates to the analysis of seven free-text comment boxes embedded in the NHS Scotland Cancer Patient Experience Survey. Comments boxes were placed at the end of each main topic section of the survey, to enable participants to add any further information about the issue covered in the preceding section. Table 1 shows the question asked before each comment box, and details the main topics of the preceding sections in the questionnaire.
Table 1: Comment Boxes
| Question Topic: Is there anything else you would like to tell us about… | Preceding Questionnaire Section Headings | |
|---|---|---|
| Comment Box 1 | The lead-up to your cancer diagnosis, or the way you found out you had cancer | Seeing your GP, Diagnostic Tests, Finding out what was wrong with you |
| Comment Box 2 | The way decisions were made about your treatment | Deciding the best treatment for you |
| Comment Box 3 | The support you received (including from a clinical nurse specialist) | Clinical Nurse Specialist, Support for people with cancer |
| Comment Box 4 | The care you received when you had an operation or stayed overnight in hospital | Operations, Hospital care as an inpatient |
| Comment Box 5 | The day patient/outpatient care you received | Hospital care as a day patient/outpatient |
| Comment Box 6 | Your chemotherapy/radiotherapy treatment | Radiotherapy and chemotherapy |
| Comment Box 7 | Your experiences of cancer care | Home care and support, Care from your General Practice, Your overall NHS Care |
In total, 4,835 cancer patients responded to the survey, and of those, 2,663 participants (55%) left at least one free-text comment. Overall, 6,961 comments were left by those 2,663 participants across the seven comments boxes. The comment boxes which generated the most comments were Comment Box 1 – lead up to diagnosis (1,673 comments), Comment Box 4 – care when you had an operation or stayed overnight in hospital (1,120 comments) and Comment Box 7 – experiences of cancer care (1,075 comments). Comment Box 6 – chemotherapy/radiotherapy treatment, received the fewest number of comments (626 comments), likely due to the fact that 50% of respondents said they didn't receive radiotherapy, and 51% said they hadn't had chemotherapy.
Questionnaires could be completed on paper or on-line. Free-text comments were transcribed and any details which could lead to an individual being identified were redacted. Socio-demographic and clinical data were anonymised and given an identifier which could be linked to comments, prior to analysis.
The socio-demographic and clinical characteristics of all participants and those who left at least one comment are described in Table 2. These figures suggest there were no major differences between those who left a free-text comment and those who did not.
Table 2: Demographic description of all respondents and those that left at least one comment
| Respondent Characteristics | Left at least one comment | All respondents | ||
|---|---|---|---|---|
| Number of respondents | Percentage | Number of Respondents | Percentage | |
| Age | ||||
| 16 – 34 | 47 | 2 | 85 | 2 |
| 35 – 44 | 130 | 5 | 182 | 4 |
| 45 – 54 | 369 | 14 | 610 | 13 |
| 55 – 64 | 649 | 25 | 1,136 | 24 |
| 65 – 74 | 864 | 34 | 1,630 | 35 |
| Age 75+ | 512 | 20 | 998 | 22 |
| Gender | ||||
| Female | 1,520 | 59 | 2,659 | 57 |
| Male | 1,072 | 41 | 2,045 | 43 |
| Sexual Orientation | ||||
| Heterosexual | 2,517 | 99 | 4,545 | 99 |
| Bisexual, Gay or Lesbian, or Other | 27 | 1 | 47 | 1 |
| Respondent Characteristics | Left at least one comment | All respondents | ||
|---|---|---|---|---|
| Number of respondents | Percentage | Number of Respondents | Percentage | |
| Ethnic Origin | ||||
| White | 2,558 | 99 | 4,635 | 99 |
| All other ethnic origins | 29 | 1 | 62 | 1 |
| Employment Status | ||||
| Don't work due to illness or disability | 227 | 9 | 383 | 8 |
| Other | 42 | 2 | 89 | 2 |
| Retired | 1,568 | 60 | 2,931 | 62 |
| Unemployed/Looking for Work | 21 | 1 | 43 | 1 |
| Work Full Time / In full time education or training | 458 | 18 | 805 | 17 |
| Work Part Time | 289 | 11 | 481 | 10 |
| SIMD quintile (2012) | ||||
| 1=most deprived | 327 | 13 | 708 | 16 |
| 2 | 453 | 18 | 804 | 18 |
| 3 | 530 | 21 | 911 | 20 |
| 4 | 572 | 23 | 1,004 | 22 |
| 5=least deprived | 644 | 25 | 1,079 | 24 |
| Urban Rural classification (13/14) | ||||
| Large Urban Areas | 795 | 32 | 1,425 | 32 |
| Other Urban Areas | 847 | 34 | 1,550 | 34 |
| Accessible Small Towns | 273 | 11 | 480 | 11 |
| Remote Small Towns | 96 | 4 | 165 | 4 |
| Accessible Rural | 327 | 13 | 554 | 12 |
| Remote Rural | 188 | 7 | 332 | 7 |
| Time since first treated for cancer | ||||
| Less than 1 year | 130 | 5 | 273 | 6 |
| 1 to 5 years | 2,391 | 94 | 4,324 | 93 |
| More than 5 years | 35 | 1 | 60 | 1 |
| Respondent Characteristics | Left at least one comment | All respondents | ||
|---|---|---|---|---|
| Number of respondents | Percentage | Number of Respondents | Percentage | |
| Current cancer status | ||||
| My cancer has been taken out/treated without any sign of further problem | 1,669 | 80 | 2,866 | 81 |
| My cancer has been taken out/treated without any sign of further problem but has since come back | 132 | 6 | 175 | 5 |
| None of the above apply to my type of cancer | 287 | 14 | 479 | 14 |
| Had cancer spread at time of diagnosis | ||||
| Yes | 360 | 15 | 613 | 14 |
| No | 2,055 | 85 | 3,789 | 86 |
| Co-morbidities | ||||
| Deafness or severe hearing impairment | 353 | 14 | 658 | 15 |
| Blindness or severe vision impairment | 58 | 2 | 117 | 3 |
| Physical disability | 334 | 14 | 592 | 13 |
| Learning disability | 12 | 1 | 26 | 1 |
| Mental health condition | 120 | 5 | 185 | 4 |
| Chronic pain lasting at least 3 months | 395 | 16 | 638 | 14 |
| Another long-term condition (including learning disability) | 689 | 28 | 1,148 | 26 |
| None of the above | 1,192 | 49 | 2,280 | 51 |
| Respondent Characteristics | Left at least one comment | All respondents | ||
|---|---|---|---|---|
| Number of respondents | Percentage | Number of Respondents | Percentage | |
| Tumour Group | ||||
| Brain/Central Nervous System | 21 | 1 | 39 | 1 |
| Breast | 659 | 25 | 1,187 | 25 |
| Colorectal/Lower gastrointestinal | 427 | 16 | 721 | 15 |
| Gynaecological | 213 | 8 | 359 | 7 |
| Haematological | 215 | 8 | 379 | 8 |
| Head and Neck | 148 | 6 | 264 | 5 |
| Lung | 163 | 6 | 292 | 6 |
| Prostate | 290 | 11 | 592 | 12 |
| Sarcoma | 20 | 1 | 34 | 1 |
| Skin | 70 | 3 | 129 | 3 |
| Upper Gastrointestinal | 118 | 4 | 189 | 4 |
| Urological | 173 | 6 | 308 | 6 |
| Other / Tumour Group Unknown | 146 | 5 | 342 | 7 |
Data Analysis
The free-text comments were analysed by a team of researchers using Thematic Analysis (Braun and Clarke, 2006). Details of the structured process used to analyse the data are provided in Appendix B.
Because of the nature and volume of the data, positive and negative codes were analysed separately, and are presented separately in the Results section.
We present the results of the free-text analysis using a range of approaches, in order to illustrate the large volume of data gathered as meaningfully as possible. First, an overview of the number and spread of comments for each section of the questionnaire is provided. This is followed by a description of the main themes arising from the analysis of the positive comments, and then a description of the themes arising from the negative comments. Finally, a breakdown of the subthemes arising from the positive and negative comments is provided for each comment box.
This report uses actual patient comments to illustrate the themes identified. Potentially revealing information has been removed from the comments, but they are otherwise presented verbatim.
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