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Publication - Report

Scottish Cancer Patient Experience Survey 2015/16: Analysis of Free-text Comments

Published: 4 Oct 2016
Part of:
Health and social care
ISBN:
9781786524843

Analysis of free-text comments provided by patients as part of Scotland’s first Cancer Patient Experience Survey.

61 page PDF

2.6MB

61 page PDF

2.6MB

Contents
Scottish Cancer Patient Experience Survey 2015/16: Analysis of Free-text Comments
Methods

61 page PDF

2.6MB

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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