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. 2021 Jul 26;30(6):e13490. doi: 10.1111/ecc.13490

Being assigned a clinical nurse specialist is associated with better experiences of cancer care: English population‐based study using the linked National Cancer Patient Experience Survey and Cancer Registration Dataset

Saleh A Alessy 1,2,3,✉, Margreet Lüchtenborg 1,2, Janette Rawlinson 4, Matthew Baker 5, Elizabeth A Davies 1
PMCID: PMC9285597  PMID: 34309952

Abstract

Objective

This study aimed to examine whether being given the name of a clinical nurse specialist (CNS) is associated with better cancer patients' experiences across different points along their cancer care pathway.

Methods

We identified 100,885 colorectal, lung, breast and prostate cancer patients who responded to the National Cancer Patient Experience Survey between 2010 and 2014. We compared experiences of four key aspects of cancer care among patients who reported being given a CNS name with those who did not, adjusting for age, sex, socio‐economic deprivation, ethnicity, route to diagnosis and disease stage.

Results

Across all cancers, patients who reported being given the name of a CNS reported better experiences with involvement in treatment decisions, care coordination, treatment with more respect and dignity, and overall care experience. Experience of being involved in treatment decisions was the aspect of care most strongly associated with being given a CNS name (colorectal: OR 2.69, 95% CI: 2.45–2.96; lung: OR 2.41, 95% CI: 2.07–2.78; breast: OR 2.68, 95% CI: 2.47–2.92; and prostate: OR 2.11, 95% CI: 1.92–2.32).

Conclusion

These findings may provide new evidence of the vital contribution CNS make to cancer care and suggest their input and support should be available to all patients after the diagnosis.

Keywords: cancer, clinical nurse specialist, patient experience, survey

1. INTRODUCTION

Patient experience is widely considered to be an important aspect of cancer care quality (The Independent Cancer Taskforce, 2015; Wolf, 2018). Previous research in England and Europe has shown hospital care quality varies in relation to inpatient nurse staffing and education and improves with higher levels of each across many care sittings (Aiken et al., 2012, 2014; Keogh, 2017; Rafferty et al., 2007). In cancer care, clinical nurse specialists (CNS) play a key role in ensuring that high‐quality information is provided to patients, coordinating their care, as well as assessing needs and providing emotional support (National Cancer Action Team, 2010; Stewart et al., 2020). Findings from the National Cancer Patient Experience Survey (CPES) 2010 show English cancer patients' experiences of care coordination and emotional support are better in NHS hospitals with large numbers of CNS (Griffiths et al., 2013).

CPES has been conducted annually since 2010 with the aim of assessing and improving patients' experiences of NHS cancer care. The survey asks patients about a wide range of care aspects including whether they have been given the name of a CNS (Quality Health, 2019). Research using different years of CPES data has so far shown variation in cancer patients' experiences by socio‐demographic and health system factors (Griffiths et al., 2013; Pinder et al., 2016; Salika et al., 2018). This variation includes patients' reports of being involved in decisions about treatment (El Turabi et al., 2013), their care coordination (Griffiths et al., 2013) of being treated with respect and dignity (Griffiths et al., 2013), and their overall care experience (Pinder et al., 2016). An important question is therefore whether being assigned a CNS has a direct impact on patients' care experiences at an individual level.

The National Cancer Registration and Analysis Service (NCRAS) recently linked the CPES dataset to the English population cancer registry to enable studies of the potential association between patients' experiences and aspects of their cancer diagnosis, treatment and outcomes (Alessy, Lüchtenborg, & Davies, 2019b). Using the CPES‐NCRAS linked dataset and focusing on the four most common cancers—colorectal, lung, breast and prostate cancers—we aimed to (1) compare the characteristics of patients who reported being given the name of a CNS with those who did not and (2) examine whether being given the name of a CNS is associated with more positive reports of experiences in aspects of care where CNS play a key role. These are being involved in treatment decisions, perceiving care is more coordinated, reporting being treated with respect and dignity, and a more positive overall care experience. A more detailed understanding of the experiences of patients who have been assigned to CNS care can provide new evidence to support cancer policies and workforce planning.

2. METHODOLOGY

2.1. Study population and data

In this population‐based cohort study, we extracted data on all individuals with invasive colorectal (C18–20), lung (C33–34), female breast (C50) and prostate (C61) cancers (International Classification of Diseases [Version 10] [ICD‐10]) who responded to CPES 2010–2014 from CPES‐NCRAS dataset (n = 114,898). CPES has been conducted by Quality Health, on behalf of NHS England, for the years 2010–2019 and contains around 70 questions covering many aspects of cancer care experience. Patients who have been discharged from NHS inpatient and day‐case admission for cancer are invited by post to complete the survey, with two reminders being sent to non‐responders (Quality Health, 2019). The response rate was stable (64–68%) between 2010 and 2014 (Quality Health, 2019). The CPES‐NCRAS dataset is linked based on patient NHS number and tumour site, using the ICD‐10 3/4‐digit code (Alessy, Lüchtenborg, & Davies, 2019b).

Some patients were surveyed more than once in different iterations of CPES. Therefore, we took the first survey record for each patient and removed additional responses (n = 6293). We also excluded cases with a missing socio‐economic deprivation score for area of residence (n = 174) and inconsistent registration dates (n = 1230). CPES contains four questions on aspects of CNS care. We focused our analysis on the survey question about patients being given the name of a CNS: ‘Were you given the name of a Clinical Nurse Specialist who would be in charge of your care?’. Patients' answers in CPES included ‘Yes’, ‘No’ or ‘I do not know’. We excluded patients who did not respond or provide informative answers about whether they have been given a CNS name (i.e., ‘I do not know’) or who did not report their care experiences (n = 6311) (Figure 1).

FIGURE 1.

FIGURE 1

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Study participant flow chart

Since CNS are actively involved with patients across the cancer care pathway, we selected four questions from CPES representing different aspects of patients' experiences of cancer services where CNS are involved. We hypothesised a priori that patients who have been given a CNS name would report better experiences in response to questions on (1) involvement in treatment decision, (2) treatment with respect and dignity, (3) overall care coordination and (4) overall care experience. For the purposes of the analysis, we categorised patients' responses into two main categories: ‘excellent’ and ‘non‐excellent’ experience in line with other reports (see Table 1) (El Turabi et al., 2013; Pinder et al., 2016; Salika et al., 2018). An additional sensitivity analysis was undertaken for the effect of (1) adding the response ‘most of the time’ to the ‘excellent’ experience category in treatment with respect and dignity aspect and (2) for adding the response ‘very good’ to ‘excellent’ experience category in overall care experience aspect.

TABLE 1.

CPES questions on aspects of cancer care categorised into excellent and non‐excellent experience

Cancer care aspects Question as phrased in CPES Experience categories based on CPES answers Notes
Excellent Non‐excellent
Involvement in treatment decision Were you involved as much as you wanted to be in decisions about your care and treatment? Yes, definitely Yes, to some extent No, but I would like to have been more involved

We excluded patients who did not provide informative answers: ‘There was only one treatment option’ or

‘Not sure/cannot remember’
Treatment with respect and dignity Were you treated with respect and dignity by the doctors and nurses and other hospital staff? Always

Most of the time

Some of the time

Never

 ‘Most of the time’ was categorised as an excellent experience in the sensitivity analysis
Overall care coordination Sometimes people with cancer feel they are treated as ‘a set of cancer symptoms’, rather than a whole person. In your NHS care over the last year did you feel like that? No

Yes, often

Yes, sometimes

 —
Overall care experience Overall, how would you rate your care? Excellent

Very good

Good

Fair

Poor

 This question is only available in CPES 2012–2014; ‘very good’ was categorised as an excellent experience in the sensitivity analysis
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For all patients, we included information on demographic and tumour characteristics at diagnosis that previous research has linked to variation in reported experiences of care (El Turabi et al., 2013; Pinder et al., 2016; Salika et al., 2018) or shown to be associated with variation in being given a CNS name (Royal College of Physicians, 2019). These include sex, age, socio‐economic deprivation of area of residence, ethnicity, geographical region of residence in England, route to diagnosis and disease stage.

Data on sex, age, geographical region of residence, deprivation of area of residence and TNM disease stage were available in the cancer registry dataset for all patients with cancer. For lung cancer, we extracted additional stage information from the National Lung Cancer Audit (NLCA) (n = 2888), which includes more detailed clinical and multidisciplinary team data returned by the audit and extracted from hospital data feeds to NCRAS (Henson et al., 2019). Although ethnicity data are collected in CPES, the response categories were slightly different in each survey year. We therefore used self‐assigned ethnicity information from cancer registration data which is derived from Hospital Episode Statistics (HES) data (Henson et al., 2019). Due to the limited numbers in each ethnic category, we collapsed the 16‐group classification into two categories: all White background (i.e., White British, Irish and other White background) and non‐White.

Socio‐economic deprivation is measured using the income domain of the indices of multiple deprivation (IMD). The geographical area used is the lower super output area (LSOA, around 1500 persons) based on post code of residence at diagnosis (Office for National Statistics, 2015). Individual patients are assigned a score of 1 (least deprived) through 5 (most deprived) based on the quintile of distribution that their LSOA falls within. Four versions of IMD were available (2004, 2007, 2010 and 2015), and we applied the closest match of IMD to each patient's year of diagnosis (IMD 2004 for diagnosis years 1998 to 2002; IMD 2007 for diagnosis years 2003 to 2006; IMD 2010 for diagnosis years 2007 to 2009; and IMD 2015 for diagnosis years 2010 to 2013). Route to diagnosis data is available for all cancer cases diagnosed in England since 2006 and are derived by linking HES data, Cancer Waiting Times data, cancer screening programmes data and cancer registration data (Henson et al., 2019). The categories used are emergency presentation, general practice referral, screening, 2‐week referral and elective referral.

2.2. Data analysis

A total number of 100,885 cases were included in the analysis (colorectal n = 25,092; lung n = 12,411; breast n = 44,399; and prostate n = 18,983). We tabulated the distribution of patient characteristics (age, sex, socio‐economic deprivation, ethnicity and geographical areas) and disease stage at diagnosis between patients reporting that they were given the name of a CNS and those who did not (Table 2). Chi‐squared tests were performed to estimate the p values for differences between groups. To assess whether being given the name of a CNS influenced patients' experiences of being involved in treatment decisions, their feeling about care coordination, being treated with respect and dignity and their overall care experience with NHS cancer care, we compared responses between patients who reported being given the name of a CNS and those who did not using univariable and multivariable logistic regression. Finally, Cohen's kappa coefficient test was used to assess the interrater reliability of lung cancer patients' reports of being given the name of a CNS in CPES with the clinical data from the NLCA on whether or not they had been assigned a CNS. All analyses were performed using Stata Software, Version 15.1 (StataCorp, Texas, USA).

TABLE 2.

Demographic and cancer stage at diagnosis for CPES responders with colon, lung, breast and prostate cancers according to reporting been given the name of a CNS

Colorectal cancer Lung cancer Breast cancer Prostate cancer
Yes % No % Yes % No % Yes % No % Yes % No %
Reporting being given a CNS name 22,716 90.5 2376 9.5 11,449 92.2 962 7.8 41,681 93.9 2718 6.1 16,405 86.4 2578 13.6
Variable N % a N % N % N % N % N % N % N %
Sex
Male 13,514 59.5 1367 57.5 6178 54.0 505 52.5 — — — — 16,405 100 2578 100
Female 9202 40.5 1009 42.5 5271 46.0 457 47.5 41,681 100 2718 100 — — — —
χ 2 and p value χ 2 = 3.4; p = 0.06 χ 2 = 0.7; p = 0.3 — —
Age group
<45 707 3.1 74 3.1 138 1.2 20 2.1 5690 13.7 470 17.3 30 0.2 4 0.2
45–59 3924 17.3 448 18.9 1932 16.9 159 16.5 16,494 39.6 1188 43.7 2517 15.3 333 12.9
60–74 11,966 52.7 1118 47.1 6918 60.4 525 54.6 15,402 37.0 811 29.8 11,093 67.6 1564 60.7
75–99 6119 26.9 736 31.0 2461 21.5 258 26.8 4095 9.8 249 9.2 2765 16.9 677 26.3
χ 2 and p value χ 2 = 28.9; p < 0.001 χ 2 = 21.9; p < 0.001 χ 2 = 71.8; p < 0.001 χ 2 = 133.6; p < 0.001
Ethnicity
White 19,969 87.9 2059 86.7 10,290 89.9 827 86.0 34,759 83.4 2265 83.3 13,978 85.2 2163 83.9
Non‐White 650 2.9 73 3.1 299 2.6 39 4.1 2038 4.9 162 6.0 635 3.9 116 4.5
Unknown 2097 9.2 244 10.3 860 7.5 96 10.0 4884 11.7 291 10.7 1792 10.9 299 11.6
χ 2 and p value χ 2 = 3.1; p = 0.2 χ 2 = 15.3; p < 0.001 χ 2 = 8.1; p = 0.01 χ 2 = 3.5; p = 0.1
Area
East Midlands 2176 9.6 292 12.3 1089 9.5 100 10.4 3755 9.0 445 16.4 1478 9.0 355 13.8
East of England 2763 12.2 260 10.9 1318 11.5 102 10.6 4957 11.9 236 8.7 1975 12.0 248 9.6
London 2140 9.4 190 8.0 1143 10.0 121 12.6 4732 11.4 311 11.4 1480 9.0 322 12.5
North East 1431 6.3 107 4.5 973 8.5 46 4.8 2417 5.8 71 2.6 837 5.1 88 3.4
North West 2833 12.5 246 10.4 1554 13.6 163 16.9 4693 11.3 181 6.7 3159 19.3 347 13.5
South East 3658 16.1 374 15.7 1437 12.6 127 13.2 6600 15.8 504 18.5 2296 14.0 337 13.1
South West 2998 13.2 229 9.6 1228 10.7 79 8.2 5077 12.2 398 14.6 2170 13.2 353 13.7
West Midlands 2549 11.2 387 16.3 1162 10.1 127 13.2 4819 11.6 428 15.7 1730 10.5 303 11.8
Yorkshire and the Humber 2168 9.5 291 12.2 1545 13.5 97 10.1 4631 11.1 144 5.3 1280 7.8 225 8.7
χ 2 and p value χ 2 = 127.2; p < 0.001 χ 2 = 50.8; p < 0.001 χ 2 = 406.3; p < 0.001 χ 2 = 152.4; p < 0.001
IMD
1 (most affluent) 5356 23.6 508 21.4 1789 15.6 168 17.5 9630 23.1 692 25.5 4230 25.8 664 25.8
2 5622 24.7 600 25.3 2318 20.2 174 18.1 10,033 24.1 620 22.8 4204 25.6 659 25.6
3 4822 21.2 505 21.3 2363 20.6 195 20.3 8984 21.6 577 21.2 3360 20.5 503 19.5
4 3962 17.4 426 17.9 2436 21.3 204 21.2 7362 17.7 503 18.5 2571 15.7 455 17.6
5 (most deprived) 2954 13.0 337 14.2 2543 22.2 221 23.0 5672 13.6 326 12.0 2040 12.4 297 11.5
χ 2 and p value χ 2 = 7.2; p = 0.1 χ 2 = 4.2; p = 0.3 χ 2 = 13.8; p = 0.008 χ 2 = 8.0; p = 0.09
Route to diagnosis
ER 2709 11.9 607 25.5 1442 12.6 125 13.0 493 1.2 67 2.5 553 3.4 146 5.7
GP 5638 24.8 558 23.5 2883 25.2 263 27.3 2931 7.0 286 10.5 6868 41.9 917 35.6
Screening 3322 14.6 164 6.9 — — — — 12,457 29.9 609 22.4 — — — —
2‐week referral 8263 36.4 700 29.5 5272 46.0 358 37.2 22,867 54.9 1277 47.0 6381 38.9 723 28.0
Elective referral 2427 10.7 265 11.2 1707 14.9 195 20.3 852 2.0 79 2.9 1545 9.4 282 10.9
Unknown 357 1.6 82 3.5 145 1.3 21 2.2 2081 5.0 400 14.7 1058 6.4 510 19.8
χ 2 and p value χ 2 = 468.5; p < 0.001 χ 2 = 39.2; p < 0.001 χ 2 = 594.6; p < 0.001 χ 2 = 608.2; p < 0.001
Stage
I 1945 8.6 142 6.0 1823 15.9 262 27.2 11,760 28.2 559 20.6 2499 15.2 305 11.8
II 3958 17.4 330 13.9 1478 12.9 112 11.6 13,258 31.8 790 29.1 2624 16.0 237 9.2
III 5677 25.0 489 20.6 3396 29.7 206 21.4 3727 8.9 237 8.7 2012 12.3 154 6.0
IV 3076 13.5 465 19.6 3777 33.0 237 24.6 1221 2.9 169 6.2 1690 10.3 280 10.9
Unknown 8060 35.5 950 40.0 975 8.5 145 15.1 11,715 28.1 963 35.4 7580 46.2 1602 62.1
χ 2 and p value χ 2 = 117.6; p < 0.001 χ 2 = 150.9; p < 0.001 χ 2 = 196.0; p < 0.001 χ 2 = 280.7; p < 0.001
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Abbreviations: CNS, clinical nurse specialist; ER, emergency presentation; GP, general practitioner; IMD, indices of multiple deprivation; χ 2, chi‐squared test, with unknown ethnicity, route to diagnosis and stage as a category.

a

Column percentage.

2.3. Patient and public involvement

The research members of the team worked transparently throughout, sharing methods and findings with two patient representative members (M. B. and J. R.) who themselves had conducted work on the CPES and were familiar with that component of the data. The representative members provided invaluable insight into aspects of these data and assisted with the drafting of this paper.

3. RESULTS

Patients' demographic and cancer stage characteristics are shown in Table 2. Overall, 90.5% of colorectal, 92.2% of lung and 93.9% of breast cancer patients reported being given the name of a CNS compared to only 86.4% of prostate cancer patients. There were slight variations by demographic and cancer stage characteristics across all cancers between patients who reported being given the name of a CNS compared with those who did not (Table 2).

Patients' reported experiences with four aspects of cancer care according to having been given the name of a CNS are shown in (Table 3). After adjusting for these variables in univariable and multivariable logistic regression analyses, being given the name of a CNS was strongly associated with reporting better experiences across all aspects of care (being involved in treatment decisions, perceiving care as more coordinated, reporting being treated with respect and dignity, and reporting a positive overall experience with NHS care) for all cancers (Table 4).

TABLE 3.

Level of reported patients' experiences with four aspects of cancer care for CPES responders with colon, lung, breast and prostate cancers according to reporting been given the name of a CNS

Involvement in treatment decision Treatment with respect and dignity Overall care coordination Overall care experience
Care aspect Level of experience Non‐excellent Excellent Non‐excellent Excellent Non‐excellent Excellent Non‐excellent Excellent
Reporting being given a CNS name N a % b N % N % N % N % N % N % N %
Colorectal cancer 5688 25.0 17,036 75.0 3729 18.6 16,313 81.4 4061 16.9 19,925 83.1 8052 44.3 10,143 55.7
No 951 45.7 1128 54.3 488 29.8 1152 70.2 660 29.2 1602 70.8 1041 63.1 609 36.9
Yes 4737 22.9 15,908 77.1 3241 17.6 15,161 82.4 3401 15.7 18,323 84.3 7011 42.4 9534 57.6
χ 2 and p value b χ 2 = 523.1; p < 0.001 χ 2 = 146.6; p < 0.001 χ 2 = 266.3; p < 0.001 χ 2 = 260.9; p < 0.001
Lung cancer 3057 26.9 8289 73.1 1112 16.4 5672 83.6 2510 21.1 9396 78.9 4071 43.9 5204 56.1
No 367 44.3 462 55.7 134 23.3 440 76.7 291 31.9 622 68.1 398 61.5 249 38.5
Yes 2690 25.6 7827 74.4 978 15.7 5232 84.3 2219 20.2 8774 79.8 3673 42.6 4955 57.4
χ 2 and p value χ 2 = 136.4; p < 0.001 χ 2 = 22.1; p < 0.001 χ 2 = 69.2; p < 0.001 χ 2 = 87.7; p < 0.001
Breast cancer 10,850 26.1 30,653 73.9 5603 15.7 29,974 84.3 9297 21.5 33,881 78.5 13,119 40.5 19,277 59.5
No 1201 48.4 1282 51.6 486 27.7 1268 72.3 1006 38.2 1630 61.8 1236 64.2 688 35.8
Yes 9649 24.7 29,371 75.3 5117 15.1 28,706 84.9 8291 20.5 32,251 79.5 11,883 39.0 18,589 61.0
χ 2 and p value χ 2 = 675.7; p < 0.001 χ 2 = 198.8; p < 0.001 χ 2 = 459.6; p < 0.001 χ 2 = 478.6; p < 0.001
Prostate cancer 4374 24.5 13,477 75.5 1320 15.0 7489 85.0 3142 17.4 14,911 82.6 6512 46.2 7588 53.8
No 935 40.1 1399 59.9 202 20.5 785 79.5 594 24.3 1854 75.7 1068 61.0 682 39.0
Yes 3439 22.2 12,078 77.8 1118 14.3 6704 85.7 2548 16.3 13,057 83.7 5444 44.1 6906 55.9
χ 2 and p value χ 2 = 351.2; p < 0.001 χ 2 = 26.2; p < 0.001 χ 2 = 92.7; p < 0.001 χ 2 = 177.1; p < 0.001
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Abbreviation: χ 2, chi‐squared test.

a

The total responses across the different questions are not the same because patients did not respond to all four questions. Further description on this can be found in Section 2.

b

Row percentage.

TABLE 4.

Odds ratio of having excellent care experiences according to reporting been given the name of a CNS

Cancer care aspects Colorectal cancer Lung cancer Breast cancer Prostate cancer
Univariable Multivariable Univariable Multivariable Univariable Multivariable Univariable Multivariable
OR 95% CI OR 95% CI OR 95% CI OR 95% CI OR 95% CI OR 95% CI OR 95% CI OR 95% CI
Involvement in treatment decision 2.83 2.58–3.10 2.69 2.45–2.96 2.31 2.00–2.66 2.41 2.07–2.78 2.85 2.62–3.09 2.68 2.47–2.92 2.34 2.14–2.57 2.11 1.92–2.32
Treatment with respect and dignity 1.98 1.77–2.21 1.93 1.72–2.17 1.62 1.33–2.01 1.68 1.36–2.08 2.15 1.92–2.39 2.03 1.80–2.27 1.54 1.30–1.82 1.51 1.26–1.78
Overall care coordination 2.21 2.01–2.44 2.12 1.92–2.35 1.88 1.59–2.14 1.91 1.63–2.21 2.40 2.21–2.60 2.24 2.06–2.44 1.64 1.48–1.81 1.57 1.41–1.75
Overall care experience 2.32 2.09–2.58 2.19 1.96–2.43 2.15 1.83–2.54 2.15 1.81–2.53 2.81 2.55–3.09 2.63 2.39–2.90 1.98 1.79–2.20 1.86 1.68–2.07
Sensitivity analysis a
Treatment with respect and dignity 2.88 2.34–3.56 2.88 2.31–3.58 2.09 1.42–3.09 2.19 1.47–3.27 2.56 2.07–3.16 2.36 1.90–2.92 2.65 1.86–3.77 2.82 1.95–4.09
Overall care experience 3.02 2.68–3.42 2.83 2.49–3.21 2.93 2.42–3.54 2.87 2.37–3.49 3.51 3.14–3.92 3.26 2.91–3.66 2.51 2.21–2.83 2.42 2.13–2.75
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Note: Univariable model = having been given the name of a CNS is the exposure and having an excellent care experience is the outcome. Multivariable model = adjusted for sex (only in lung and colorectal cancers), age, ethnicity (missing as a covariate), area, socio‐economic deprivation, route to diagnosis (missing as a covariate) and stage (missing as a covariate).

a

Sensitivity analysis = excellent care experience with being treated with respect and dignity = ‘always’ and ‘most of the time’ versus· all other categories and excellent overall experience with care = ‘excellent’ and ‘very good’ versus·all other categories.

Experience of being involved in the treatment decision was the aspect of care most improved (rated excellent) if patients reported being given the name of a CNS (colorectal: adjusted OR 2.69, 95% CI: 2.45–2.96; lung: adjusted OR 2.41, 95% CI: 2.07–2.78; breast: adjusted OR 2.68, 95% CI: 2.47–2.92; and prostate: adjusted OR 2.11, 95% CI: 1.92–2.32) (Table 4). Across all cancers, this was followed by overall care experience, care coordination, and being treated with respect and dignity (Table 4). In a sensitivity analysis, the association between having been given the name of a CNS and having excellent care experiences was stronger across all cancers for the respect and dignity and overall care experience aspects (Table 4).

Table 5 shows the number of lung cancer patients who reported being given the name of a CNS in comparison to the assignment of a CNS recorded by NLCA. Most of patients who reported having been given the name of a CNS were also recorded as having been allocated a CNS (kappa = 0.80; very good agreement; p value <0.001; 95% CI: 0.79–0.82).

TABLE 5.

Comparison of the agreement between reporting been given the name of a CNS in CPES and indication of being assigned a CNS in the cancer registry data for lung cancer patients

Reporting being given a CNS name in CPES Being allocated a CNS from cancer registry data Kappa a
No Yes Missing Total
No 50 631 281 962

Kappa = 0.80 b

p value = <0.001

95% CI = 0.79–0.82
Yes 174 9506 1769 11,449
Total 224 10,137 2050 12,411
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a

Kappa test did not include missing data.

b

Very good agreement.

4. DISCUSSION

4.1. Summary of main findings

This study used 4 years of linked CPES and cancer registration data for 100,885 patients to examine whether being given the name of a CNS is associated with reporting more positive care experiences for patients with breast, colorectal, lung and prostate cancers. A strong association emerged between being given the name of a CNS and reporting being more involved in treatment decisions, perceiving care as more coordinated, being treated with dignity and respect and better overall experiences with NHS cancer care across all four cancer types.

4.2. Comparison with other findings

Few large population studies of the role of the CNS in cancer care have considered its possible influence across the cancer care pathway. A previous study using 2010 CPES data alone revealed that numbers of CNS per NHS hospital trust varied across England (Griffiths et al., 2013). It also showed that patients' experiences of care coordination and emotional support were better in hospital trusts that had higher numbers of CNS. While we have not assessed the relationship of experience to the numbers in each trust, our case‐mix adjusted analysis shows better patient experiences with involvement in treatment decisions, perceived care coordination, being treated with dignity and respect, and overall care experience with NHS cancer care when patients report being given the name of a CNS. A recent Swedish study found that the implementation of a new oncology nursing role led to improvements in patients' perceptions of health‐related information, supportive care resources and care coordination of care (Westman et al., 2019). In addition, a recent review showed that studies from several countries other than the United Kingdom, including Ireland, the Netherlands, Australia, New Zealand and South Korea, found that the CNS role was important in improving patient satisfaction, symptom management, meeting information needs and improving subsequent care outcomes (Kerr et al., 2021). Our findings are therefore consistent and suggest that it is the presence of a CNS that is important in leading to patients' reports of better experiences.

Furthermore, previous research highlighted variation in access to a CNS both by region of residence and by cancer type (Leary et al., 2011; Trevatt et al., 2008). Our study also revealed variation in being given the name of a CNS by cancer type and geographical region. Although among CPES responders 92% of lung cancer patients reported being given a named CNS, only around 71% of lung cancer patients overall in England were assessed by a lung CNS in 2017 (Royal College of Physicians, 2019). While this could not be verified for the other cancers, due to the lack of detailed data on the assignment of CNS, the difference for lung cancer may reflect the fact that the survey data are less representative of all lung cancer patients than for the other three cancers (Alessy, Davies, et al., 2019).

4.3. Strengths and limitations of the study

To our knowledge, this study is the first to use linked cancer experience and cancer registration data to examine the impact the role of the CNS makes on patients' experiences across many aspects of cancer care. One strength of our study is the large sample size and the different cancer types studied. This allowed for detailed case‐mix assessment of the role of the CNS across different aspects of cancer care in a diverse cancer population.

We recognise our study has some limitations. First, studies using survey data are prone to recall bias. Some patients in this study may have reported not being given the name of a CNS when they had been, or they may have mis‐identified a ward nurse or a palliative care nurse as a CNS. This therefore might lead to an assumption that being given a CNS name, which is the independent variable in this study and reported by patients in CPES, is not an actual exposure to CNS allocation to cancer patients. Indeed, we had hypothesised that the CNS name question is an indication of CNS allocation, as it shows an important aspect of cancer care from the patients' perspective. Data on whether lung cancer patients were allocated and assessed by a CNS for the population cohort in this study were collected by the National Lung Cancer Audit (LUCADA) and currently set within NLCA database within NCRAS (Rich et al., 2011). We were therefore able to validate the survey reports in the case of lung cancer patients by using the more detailed clinical data collected and extracted for the NLCA. A large percentage (83%) of patients who reported having been given a CNS name had also been recorded as being assigned to one according to the NLCA.

Second, although CPES had a good response rate (64–68%) between 2010 and 2014, it needs to be borne in mind that the survey only samples a section of the wider cancer population and studies have shown that patients with the poorest diagnosis are not always well represented (S. A. Alessy, Davies, et al., 2019). CPES is one of the most comprehensive and largest cancer patients' experience survey in the world. Although the 4‐year attritions of CPES (2010–2014) might appear as outdated now, these CPES data are the most updated series currently linked to the cancer registry. In addition, these 4 years had consistent questions across the years, giving rise to sufficient power to undertake this study. More recent surveys have undergone changes to the questions, which impedes combining the data. Future linked data may need to be used to assess whether recent years CPES rounds confirm the consistency of our findings. In addition, although NCRAS data completeness for stage and ethnicity has improved since 2012 (Henson et al., 2019), a proportion of patients had missing information on disease stage, ethnicity and route to diagnosis. For lung cancer stage, missing information was supplemented using information available from the NLCA. Finally, a small percentage of patients had unknown route to diagnosis data, and this varied between cancers as already shown (Elliss‐Brookes et al., 2012).

4.4. Study implications

Improving patients' experiences of cancer care has been a high priority in the NHS cancer strategy. CNS play a vital role in cancer patients' care pathways by eliciting and managing their concerns, promoting their well‐being, providing physical and emotional support, coordinating care services, and informing and advising them (Macmillan Cancer Support, 2014). There is, however, currently concern about the challenges facing CNS in cancer care because of restrictions on funding and an ageing workforce (Whittaker et al., 2017). Whilst the CNS workforce is continuing to grow, more are now employed on lower salary scales than in previous years, suggesting they are less experienced and skilled, which might impact on the quality of care and hence patients' experiences (Macmillan Cancer Support, 2017). Moreover, some variability still exists in the number of CNS vacancy posts across England (Macmillan Cancer Support, 2017). This variability will therefore require careful workforce planning to ensure recruitment and retention to the CNS workforce in order to maintain the level of patient experience reported in this study. Moreover, given that cancer patients are predicted to suffer delays in diagnosis and treatment due to the impact of the COVID‐19 pandemic on NHS capacity (Maringe et al., 2020), the role of CNS in maintaining remote consultation and support will be even more vital.

Our study showed that CNS play a crucial role in improving patients' experiences in several important aspects across the cancer care pathway. These findings are particularly important as excellent experiences have been shown to benefit patient safety and outcomes (Alessy, Lüchtenborg, & Davies, 2019a; Doyle et al., 2013). One way of interpreting our findings is that giving patients a named CNS enables a trusted relationship to grow more quickly in the initial period after diagnosis. This could prevent or offset the effect of seeing different clinicians at subsequent appointments and re‐explaining concerns, which patients often describe as a frustrating experience. Future research should focus on how well CPES captures experiences of the work done by CNS, the extent of equity in access to care, and on determining whether it is CNS availability, the size of the cancer centre or its ability to foster organisational cultures that empower both CNS and the whole cancer team that lead to the improved experiences of care. Moreover, while these findings might be applicable to other countries, CNS responsibilities and working practices within cancer care can vary between different cancer care settings (Cooper et al., 2019). For example, an advanced nurse practitioner (ANP) in different countries may fulfil the same role that CNS undertake within the NHS, while some countries might not have specialist nurses employed in cancer care (Challinor et al., 2020).

5. CONCLUSION

This study demonstrates evidence of the positive impact of a CNS on patients' experiences across several important aspects of the cancer care pathway. These findings can be used by cancer policymakers, charities, cancer services and patient representatives as evidence of the significant role CNS play in cancer care. Future research should focus on determining where and how CNS play the most vital role, as reflected in improved patient experiences, and how to ensure equity of access to their care.

CONFLICT OF INTERESTS

The authors declare no conflicts of interest. All authors have completed the ICMJE uniform disclosure form at http://www.icmje.org/coi_disclosure.pdf and declare no support from any organisation for the submitted work, no financial relationships with any organisations that might have an interest in the submitted work in the previous 3 years, and no other relationships or activities that could appear to have influenced the submitted work.

ACKNOWLEDGEMENTS

This work uses data that have been provided by patients, the NHS and other healthcare organisations as part of patient care and support. The data are collated, maintained and quality assured by the National Congenital Anomaly and Rare Disease Registration Service, which is part of Public Health England (PHE). We thank Gabrielle Emanuel, Dr Joanna Pethick and Bukky Juwa from Public Health England for their help in extracting the data. We also thank Dr Jo Armes and Professor Henrik Møller for their helpful comments and suggestions on this analysis.

This research received no specific grant from any funding agency in the public, commercial or not‐for‐profit sectors. This work is part of Saleh Alessy's PhD project, which is fully sponsored by Ministry of Education, Riyadh, Saudi Arabia.

Alessy, S. A. , Lüchtenborg, M. , Rawlinson, J. , Baker, M. , & Davies, E. A. (2021). Being assigned a clinical nurse specialist is associated with better experiences of cancer care: English population‐based study using the linked National Cancer Patient Experience Survey and Cancer Registration Dataset. European Journal of Cancer Care, 30(6), e13490. 10.1111/ecc.13490

DATA AVAILABILITY STATEMENT

Data for this study are collated, owned, maintained and quality assured by the National Cancer Registration and Analysis Service within Public Health England. The authors do not own these data and therefore are not permitted to share or provide these data other than in scientific communication format.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

Data for this study are collated, owned, maintained and quality assured by the National Cancer Registration and Analysis Service within Public Health England. The authors do not own these data and therefore are not permitted to share or provide these data other than in scientific communication format.

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