ace wave 2 patient experience survey - cancer research uk...piloted in england as part of the ace...

ACE Wave 2 Patient Experience Survey Dr Jen Howse Professor Greg Rubin

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Contents

Executive Summary ......................................................................................................................... 2

1.0 Background and Introduction .................................................................................................. 3

1.1 MDC models .......................................................................................................................... 4

1.2 Patient experience surveys .................................................................................................. 5

2.0 Methods .................................................................................................................................... 7

2.1 Survey Development and administration ............................................................................ 7

2.2 Sample size ............................................................................................................................ 8

2.3 Analysis .................................................................................................................................. 8

2.3.1 Survey Scoring ............................................................................................................... 8

2.3.1 Statistics ......................................................................................................................... 9

3.0 Results ..................................................................................................................................... 10

3.1 Response rate ..................................................................................................................... 10

3.2 Survey results ...................................................................................................................... 10

4.0 Discussion ................................................................................................................................ 19

4.1 Comparison across sites ..................................................................................................... 19

4.2 Comparison with the National Cancer Patient Experience Survey .................................. 19

4.3 Strengths and Limitations................................................................................................... 20

5.0 Conclusion ............................................................................................................................... 22

6.0 References ............................................................................................................................... 23

Appendix A Glossary ..................................................................................................................... 24

Appendix B: Survey ....................................................................................................................... 25

Appendix C: Scored Survey ........................................................................................................... 30

Appendix D Results ....................................................................................................................... 35

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Executive Summary

Multidisciplinary Diagnostic Centres (MDCs) are increasingly a feature of national strategies

for the improvement of cancer outcomes. First developed in Denmark, they are now being

piloted in England as part of the ACE (Accelerate, Co-ordinate, Evaluate) programme to

improve cancer diagnostic pathways in England.

Patient experience is a key consideration in the development of health care services, and

survey tools have been developed, notably the Cancer Patient Experience Survey (CPES). In

the absence of a suitable specific tool for MDCs, and at the request of the ACE programme,

we developed a 21 item survey specifically to measure patient experience of the MDC

pathway. The survey tool drew on and adapted previously validated items from CPES and

from the Manchester Cancer Survey. Face validity was confirmed at the six ACE MDC pilot

sites; comprehension and ease of completion at two of those sites.

The patient experience survey was implemented at six pilot MDC sites between May 2017

and February 2018. During this period 854 patients were seen and 256 completed surveys

received (30% response, range 16-44%). The large majority reported a positive experience,

indeed 95% reported that their tests were explained in a way that could be understood

completely or to some extent, and 97.5% said that they had the opportunity to ask questions.

Where comparable, positive response rates were similar to those reported in CPES and

notably better in relation to people involved in their care working together. There were

differences between individual sites on some aspects of patient experience, but survey

numbers for each site were too small to draw meaningful conclusions.

We have developed a validated tool to survey patient experience of the MDC pathway, and

have confirmed the feasibility of its use in routine care. We recommend that it be adopted

for the routine monitoring of patient experience as MDCs are mode widely implemented.

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1.0 Background and Introduction

The publication of Improving Outcomes: a Strategy for Cancer (Department of Health, 2011)

brought an increased emphasis on access to diagnostic testing, with additional funding to

Primary Care Trusts to enable this. The ACE programme (Acceleration, Coordination and

Evaluation), a collaboration between NHS England, Cancer Research UK and Macmillan

Cancer Support, responded to a desire to accelerate the pace of change towards earlier

diagnosis by extending the range of pathways to cancer diagnosis. It was informed in part by

developments in cancer diagnostic services in other countries, notably in Denmark (Vedsted

& Oleson, 2015). The overarching objective of the ACE programme was to develop a national

body of evidence and evaluation that informed the operational improvement of early

diagnosis cancer pathways through the 2016/17 and 17/18 commissioning rounds.

The ACE programme was initiated in June 2014 with a set of 60 projects that explored

specific interventions and models, with the aim of ‘preventing people from dying

prematurely’. The programme received further strategic momentum through the report of

the Independent Cancer Taskforce in 2015, Achieving World Class Cancer Outcomes

(Independent Cancer Taskforce, 2015).

In ACE Wave 2, the focus was more specifically on diagnostic pathways for patients with non-

specific but concerning symptoms, building on the Danish model of Multidisciplinary

Diagnostic Centres (MDC). Ten pilot sites were selected to participate.

The Policy Research Unit (PRU) for Cancer Awareness, Screening and Early Diagnosis was

commissioned to evaluate the Wave 2 ACE programme. Within that commission, the Primary

Care Oncology Group at the University of Newcastle was asked to undertake a survey to

understand the experience of patients using these pilot services.

While surveys such as the National Cancer Patient Experience Survey exist to evaluate the

overall experience of cancer services, none have been designed specifically for the MDC

pathway of care. This report describes the development, administration and results of a

patient experience survey of patients attending MDCs at 6 pilot sites that [participated in the

survey.

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1.1 MDC models

Cancer symptoms are not always clear and symptoms such as abdominal pain, weight loss

and fatigue can be caused by a wide range of conditions. They can be hard to diagnose as GPs

often have difficulty in identifying the most appropriate test or where to refer such patients.

If a patient has symptoms clearly linked to a particular cancer, for example a persistent cough

possible indicative of lung cancer, there are urgent referral pathways in place for the GP to

use. However, no comparably urgent referral pathway exists for people presenting with

worrying but non-specific symptoms. These patients often bounce back and forth between

services until a diagnosis is made, with consequent delays to diagnosis and treatment.

Denmark has a similar health service to the UK. In 2010, research carried out as part of the

International Cancer Benchmarking Partnership (ICBP) showed that both the UK and

Denmark lagged behind the rest of Europe in terms of cancer survival. In response to this

information, Denmark developed a cancer strategy that included diagnostic routes for both

alarm symptoms and non-specific symptoms. A referral pathway was designed to allow

people with worrying but non-specific symptoms to be referred to an MDC, where they

would receive all appropriate tests, preferably at one visit. The MDC brings together a

number of specialists together to enable a range of tests to be done and the results

discussed. A No-Yes Clinic (NYC) was also developed for people presenting with “low risk but

not no risk” symptoms. This allows GPs access to investigations while retaining clinical

responsibility for the patient. The Danish model is detailed in figure 1.

Figure 1 The Danish three-legged diagnostic strategy (Vedsted & Oleson, 2015)

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The ACE Wave 2 aimed to pilot implementation of the MDC concept in the setting of the

English NHS. Six pilot sites participated in this survey:

Airedale NHS Foundation Trust

Leeds Teaching Hospitals NHS Trust

London Cancer: North Middlesex University Hospital

Manchester: The Northern Care Alliance (Royal Oldham Hospital)

Manchester: Manchester University NHS Foundation Trust (Wythenshawe Hospital)

Oxford University Hospitals NHS Foundation Trust

Each site developed an MDC based on the Danish model.

All sites followed a broadly similar pathway, with patients referred by the GP after having a

pre-defined set of investigations in general practice. The referrals are triaged by a Clinical

Nurse Specialist (CNS) or other clinician and further tests and scans ordered where

appropriate. Once investigations are complete the patient is discussed in the MDC and may

be reviewed by a clinician face to face. At this point the patient is either discharged back to

the GP with a management plan or transferred to an appropriate service, depending on the

diagnosis. All the sites have someone fulfilling a ‘navigator’ role, who supports the patient

and is a point of contact. The exact role of the navigator varies from site to site. In some

places such as Oxford and Manchester the roles are also clinical and fulfilled by a radiologist

or CNS. In other sites, an administrator fulfils the role.

There are some differences between the models. The two sites in Manchester aim to be a

“one stop shop” with the scans and clinic appointments on the same day. All the other sites

carry out scans and clinic appointments on separate days. All the pathways require the GPs to

undertake an initial set of investigations. All the sites, apart from Oxford, require the GP to

review these investigations prior to referral to ensure that the ACE pathway is appropriate for

the patient. In Oxford, the GP orders the investigations at the same time as the referral is

made. The results are then reviewed in the MDC, not by the GP.

1.2 Patient experience surveys

Analysis of patient experience is important in developing effective and high quality services

(Black and Jenkinson, 2009, Gleeson et al, 2016). A number of methods have been used to

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collect information on patient experience including interviews and observation. However,

surveys are the most common tool for collecting data regarding patient experience (Gleeson

et al, 2016). Survey tools have been used in cancer services to explore patient experience of

specific services (Brown et al, 2015) or of cancer services as a whole. The National Cancer

Patient Survey (CPES) has collected data on patient experience of cancer services for a

number of years (http://www.ncpes.co.uk/).

The surveys tools used to measure patient experience need to be reliable and valid, that is

they should produce consistent results and measure the concept that they intend to. There

are several aspects to validity; face, content, criterion and construct (Sapsford, 2007). A

number of errors can arise using surveys. These include coverage error, sampling error,

measurement error and non-responses error (Dillman, 2009) Coverage errors arise when the

survey sample does not represent the population being investigated. Sampling error occur

when some people are surveyed and others are missed out. The measurement error occurs

when inaccurate answers are given either due to people unwillingness to give responses or

due to problems with the survey questions themselves. Non-response errors occur when only

the some of the sampled group give answers.

Several of the ACE wave 1 projects developed surveys to evaluate the experience of patients

using the services. The Manchester Cancer jaundice pathway used an online survey which

utilised a number of the CPES questions (O’Reilly, 2016).

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2.0 Methods

2.1 Survey Development and administration

No validated patient survey was found for use in MDCs. However there are two validated

surveys that have been used in to evaluate people experience of cancer services; the National

Cancer Patient Experience Survey (CPES) and the Manchester Cancer Survey.

The Manchester Cancer Survey was used by the ACE Wave 1 Manchester Jaundice project,

which aimed to improve time to diagnosis and patient experience of patients presenting with

jaundice who may have pancreatic cancer. In this case the survey was used in an online form.

As in the MDC, not all patients using this pathway were subsequently diagnosed with cancer.

The survey uses a number of questions from CPES that are applicable to patients that may

not have cancer, but are undergoing tests to exclude a cancer diagnosis.

These surveys were mapped against the MDC pathway to identify the most relevant items. All

the questions from CPES that were used in Manchester ACE wave 1 project were included in

the draft ACE Wave 2 survey. Additional CPES questions were then included to ensure that

the whole ACE pathway was evaluated. Where necessary, questions were modified to reflect

the fact that only a minority of patients attending an MDC would receive a cancer diagnosis.

A new question was created to gather information about whether lifestyle advice was given

(question 16) following feedback from the two Manchester sites, both of which considered

this to be an important part of the service they provided. A version of the survey was used at

the Manchester (Wythenshawe) sites from December 2017 when the pilot service started,

testing face validity, ease of completion and the process of distributing and collecting

surveys.

Face validity was further established by the six pilot sites reviewing the draft survey. Some of

the questions were changed as a result of feedback to ensure greater clarity. Amendments

were made to ensure that the wording was applicable to all the pathways, and the survey

was designed so that each site could insert their pathway name into questions where

necessary.

The resulting survey instrument is provided in Appendix B.

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Sites were responsible for printing, distributing and collecting the surveys. The sites issued

the survey to patients when they were discharged from the MDC or referred onwards to

another service if appropriate. Completed surveys were returned to the MDC, which

forwarded completed surveys to Newcastle University for analysis. Surveys received between

May 2017 and the end of February 2018 were included in the analysis.

2.2 Sample size

Bartlett et. al. (2001) suggest a sample size of 260 is adequate to achieve a margin of error of

5% for categorical data for a population of 800. A general rule of thumb is to have 50 more

respondents than 8 times the number of items or 10-20 times as many respondents as

variables (Blunch, 2008). With a 21 item survey, this suggests that between 200 and 400

responses are adequate.

2.3 Analysis

The number of response received was adequate to conduct an analysis of the MDCs as a

group, but not for individual sites. We did not conduct a comparison of different groups of

patients, as the total number of responses was insufficient for analysis by age or ethnicity.

Respondents were highly skewed to the white ethnic groups. Comparison by gender was not

carried out as in the National Cancer Patient Experience Survey found little impact of gender

on responses.

2.3.1 Survey Scoring

For the questions that directly relate to patient experience the responses were scored as

positive, negative, or neutral as has been done in the National Cancer Patient Experience

Survey. Each answer option was identified as either positive (1), negative (0) or neutral (-). As

an example, the scoring for question 3 is shown below. Questions 3-6,7-8 and 11-17 are

scored in this way. The fully scored survey is included in appendix C.

3. Did your GP explain why they had referred you to the MDC?

1 Yes, I had a full explanation

0 I had some explanation

0 I had a little explanation but would have liked more

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0 I had no explanation

I did not see my GP/I went directly to the hospital

Where appropriate the responses are presented as the proportion of responses (expressed

as a percentage) that were positive. To calculate the percentage, neutral scores were

excluded, positive scores used as numerator and the total positive and negative scores were

used as denominator.

2.3.1 Statistics

Confidence Intervals

For questions with positive percentage scores, the 95% confidence intervals were calculated

to describe the accuracy and the single score point. Confidence intervals were calculated

using Wilson’s Confidence Intervals.

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3.0 Results

3.1 Response rate

256 completed surveys were received from all the sites. 842 patients were seen in the MDC

in the period from May 2017 to February 2018, giving an overall response rate of 30%,

assuming all patients received a survey. Sites were required to survey all patients. However

no detailed records of survey administration were kept and we cannot be certain that every

patient attending a pilot MDC was invited to complete a survey. Response rates at individual

sites varied from 16% to 44%. Data for individual sites are shown in Appendix D.

53% (n=131) of respondents were female and 90% (n=224) were white. Just over two third

(n=165) were aged 65 years and over. Nearly two thirds (n=146) reported that day-to-day

activities were limited to some extent due to a health condition or disability.

3.2 Survey results

A full summary of results is included in Appendix D.

Respondents were asked how long it took from thinking that there was something wrong

until they first contacted their GP. 51% waited less than a month, with 6% waiting longer than

6 months. 4% did not visit their GP before being diagnosed.

I did not see my GP before

being diagnosed

4%less than 1

week15%

Less than 1 month

37%

1 to 3 months27%

4 to 6 months6%

More than 6 months

6%

Don't know5%

How long was it from the time you first thought something might be wrong before you contacted your GP?

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When asked about how many times they visited their GP before being referred to the

hospital, 57% reported seeing their GP once or twice, while 8% saw their GP five or more

times. All sites except London had patients who did not see their GP.

60% reported that they had a full explaination from their GP as to why they were being

refered, but 9% said that they had been given no explanation. Analysis of the scored

responses shows 64.2% responding positively (95% CI interval 57.5-70.3%).

I did not see my GP before being

diagnosed5%

I saw my GP once36%

I saw my GP twice21%

I saw my GP 3 or 4 times26%

I saw my GP five or more times

8%

Don't know/can’t say4%

How many times did you see your GP?

Yes I had a full explanation

60%I had some explanation

16%

I had a little explanation but would have likes

more9%

I had no explanation

9%

I did not see my GP/ I went straight

to hospital6%

Did your GP explain why they had referred you to the ACE pathway/MDC?

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86% reported that they understood the explanation of the purpose of the visit either

completely or to some extent. The % positive score was 62.9% (95% CI interval 57.5-70.3%).

Written information was given to nearly three quarters of respondents, with % positive score

of 77.5% (95% CI 71.2-82.6%).

Yes, completely61%

Yes, to some extent25%

No, but I would have liked an explanation

6%


4%

Don’t know/ I can't remember

4%

Were you given an explanation of the purpose of the visit and what it would involve?

Yes, it was easy to understand

67%

Yes, but it was difficult to

understand6%

No, but I would have liked written

information 14%

I did not need written information

9%

Don't know/ Can't remember4%

Before your visit, were you given written information?

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When asked whether they had been told that they could bring a friend or relative with them

to the MDC appointment, 72% reported that they had been told they could. 7% stated it was

not necessary. The % positive score was 84.7% (95% CI 79-88.9%).

86% of respondents reported that they had all the information they needed about the tests.

Respondents were offered more than 1 choice in response to this question.

Yes72%

No13%

It was not necessary7%

I was told by phone or letter

4%

Don’t know/Can't rememeber

4%

Before the appointment. were you told you could bring a relative or friend with you?

Yes86%

No, I would have liked more written

information5%

No, I would have liked more verbal

information4%

I did not need/want any information

3%

Don't know/ can't remember

2%

On the day, did you have all the information you needed about your tests?

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When asked about the length of time taken for the tests to be done, 89% reported that it felt

about right. Only 1% felt that the tests took much too long. Analysis of the scored responses

shows 91.1% responding positively (95% CI interval 86.9-94.1%).

95% said that the test results were explained in a way that was could be understood

completely or to some extent.

It was about right89%

It was a little too long 8%

It was much too long1%

Don't know/ can't remember 2%

Overall how did you feel about the length of time it took for the tests to be done?

Yes, completely80%

Yes, to some extent15%

No, I did not understand the

explanation2%

I did not have an explanation, but I would have liked

one2%

I did not need an explanation

0%


1%

Were the results of the tests explained in a way you could understand?

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Most respondents were told about the diagnosis by a hopsital doctor (63%), with 19% told by

a Nurse Specialist and 15% by their GP.

65% reported that they had been told that they could bring a friend or relative when they

were given the diagnosis. This question gave a % positive response rate of 86.2% (95% CI

80.3-90.6%).

Hospital Doctor63%

Nurse specialist19%

GP (family doctor)15%

Another health professional

2%

Family member/ friend

1%

Who first told you about your diagnosis?

Yes65%

No11%

It was not necessary16%


4%


4%

When your were first told your diagnosis, had you been told you could bring a friend or relative?

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89% said they understood the explaination of what was wrong with them either partially or

completely; a scored positive % response of 69.6% (95% CI 63.2-75.3%).

60% were given written information about what would happen next that was easy to

understand, with a further 4% being given written information that was hard to understand.

Yes, I completely understood it

65%

Yes. I understood most of it

24%

No, I did not understand it

5%

Can't remember6%

Did you understand the explaination?

Yes and it was easy to understand

60%


understand4%

No25%

Don't know/Can't remember

11%

When you were given your diagnosis were you offered written information about what would happen next?

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Most respondents felt they were given the opportunity to ask questions, with a positive %

score of 97.3% (95% CI 94.2-98.7%).

Nearly two thirds were given a written summary of the consultation. The positive % score

was 70% (95% CI 63.3-75.8%).

Yes93%

No2%

I felt I could not ask1%

Don’t know/can't remember

4%

Were you given the opportunity to ask questions?

Yes62%

No27%


11%

Were you offered a record/written summary of your consultation?

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59% were given information regarding lifestyle advice to improve their health, with a further

11% reporting that they would have liked to receive information; a % positive score of 83.8%

(95% CI 77.3-88.7%)

When asked how different people worked together to give the best possible care, only 1%

reported that it was never the case. 82% stated that the different people involved in their

care always worked well together to deliver care. The overall positive % score was 85.0%

(95% CI 79.9-89.0%).

Yes59%

No, But I would have liked

information11%

It was not necessary

27%


3%

Did you get given information about lifestyle or other advice to improve your health or manage your condition?

Yes, always82%

Yes, most of the time11%

Yes, some of the time3%

No, never1%


3%

Did the different people treating and caring for you work together well to give you the best possible care?

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4.0 Discussion

In this survey of patients attending the MDCs that constituted the ACE wave 2 pilot

programme, the large majority reported a positive experience. Where comparable, the

proportion describing a positive experience was similar to that reported in the CPES, though

a significantly greater proportion of MDC attendees reported that the people involved in

their care worked well together.

4.1 Comparison across sites

The results from each site are included in appendix D. The number of surveys returned was

insufficient to perform any tests of significance for the differences between sites. In general,

there was little variation in results across the sites. However, there were outliers for certain

questions. London Cancer scored lowest for GP explanation of why they had been referred to

the MDC, the length of time it took for tests to be done and explanation of the results of the

tests. The Leeds and Oxford sites had the lowest proportions of people reporting that they

knew they could bring a friend or relative when they were given the diagnosis. These two

sites also had the highest percentage reporting that it was not necessary.

When asked if all the different people involved worked together to deliver the best possible

care Manchester (Wythenshawe) and Manchester (Northern Care Alliance) had the highest

percentage of people reporting that this was always the case (98 and 96% respectively).

London Cancer (58%) and Leeds (63%) scored lower than the national average of 82%.

While London Cancer scored lower that some other sites on certain questions, it should be

noted that their response rate of 18% (19 surveys) is lower than all other sites apart from

Oxford (16% response rate /13 surveys). No conclusions should be drawn due to the small

numbers involved.

4.2 Comparison with the National Cancer Patient Experience Survey

A number of questions in this survey were drawn from the National Cancer Patient

Experience Survey (CPES). Not all are directly comparable, as while they use the same

wording, they are about different aspects of the cancer pathway or for different patient

groups. The results from questions that are most directly comparable to the CPES are shown

in table 1. Results from the MDC patient experience survey are generally comparable to

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results from CPES. However, a higher percentage responded positivity to the question about

different people working together to give the best possible care in the MDC survey compared

with CPES. There are key differences between the patients surveyed in this study and those

surveyed in CPES. In our studies, the majority of respondents will have not received a

diagnosis of cancer, whereas CPES respondents had received a cancer diagnosis. The CPES

considers care over a prolonged period of time, but the ACE survey considers a single episode

of care and in a pilot service. The MDC service has a number of features that would not be a

normal part of routine cancer pathways, such as the navigator role. Although the exact

nature of this role varies from site to site, they all share similarities in that they provide

support and are a contact point for the patient as they go through the pathway.

Table 1 ACE MDC survey and 2016 CPES results

ACE MDC CPES 2016

Lower 95% CI

National Average

Higher 95% CI

Lower 95% CI

National Average

Higher 95% CI

Were the results of the tests explained in a way you could understand? 75.8% 81.1% 85.5% 78.7% 79.1% 79.4%

When you were first told your diagnosis, had you been told you could bring a relative or friend with you? 80.3% 86.2% 90.5% 75.6% 75.9% 76.2%

Did you understand the explanation of what was wrong with you? 63.2% 69.6% 75.3% 72.9% 73.2% 73.5%

When you were first given your diagnosis, were you offered written information about what would happen next? 61.1% 67.8% 73.9% 72.1% 72.4% 72.8%

Did the different people treating and caring for you (such as GP, hospital doctors, specialist nurses and navigators) work well together to give you the best possible care? 79.9% 85.0% 89.0% 60.8% 61.2% 61.6%

4.3 Strengths and Limitations

The survey is limited by the low response rate and the total number of responses. The overall

response rate was lower than 2016 CPES survey; 66.5% compared with 30.0%. It also varied

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across the six sites, with three having a response rate of over 40% (Airedale, Manchester

(Wythenshawe) and Manchester (Northern Care Alliance) sites). The King’s Fund report ‘The

point of care. Measures of patients’ experience in hospital: purpose, methods and uses (2009)

suggests that 40% is a minimum acceptable response rate for a postal survey of patient

experience.

Unlike CPES, this survey was only available in paper form, with no online or telephone option

available. Having an online web-based survey tool may have increased the response rate.

The survey was only available in English, which may exclude some patients from participating.

However, in the 2016 CPES only seven out of the 72,778 responses chose to use the

translation/interpreting service so it is unlikely that provision of translation services would

have increased response rate significantly.

Not all the surveys were completed in entirety by every respondent. There was an issue with

a small number of Manchester (Wythenshawe) surveys which were printed with a page

missing, resulting in lower completion rates for certain questions. Overall completion rates

for individual questions ranged from 89.1% to 98.8%. The lowest completion rates were for

questions were the printing error arose. This may lead to some degree of nonresponse error.

However for the questions where Manchester (Wythenshawe) had a lower response rate the

results were not noticeably different from the other sites. An online web-based survey would

reduce errors due to printing and compilation of paper based surveys.

Coverage errors should have been minimal as the survey was given to all participants that

used to the pathway. However, we cannot be certain that all patients attending the MDCs

were sent a survey as no individual records were kept. Secondly, this survey did not collect

diagnostic information and so we could not compare the case mix between respondents and

non-respondents.

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5.0 Conclusion

We have developed a validated instrument to survey patient experience of the MDC pathway

It is has been shown to be feasible to use in a number of sites and we propose that it should

be adopted for routine use to monitor patient experience as MDCs are more widely

implemented.

The results of this initial survey show that patients referred though the MDC pathways report

high levels of positive experience, comparable to or better than reported in the 2016 CPES

survey of patients with cancer. In particular, patients report high levels of satisfaction with

how all the people caring for them in the MDC work together to give the best possible care.

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6.0 References

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appropriate sample size in survey research. Information technology, learning and

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Black N, Jenkinson C. (2009) How can patients’ views of their care enhance quality

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Blunch, N. J. (2008). Introduction to structural equation modelling using SPSS and

Amos. London: Sage Publications Ltd.

Brown S, Bevan R, Rubin G, Nixon C, Dunn S, Panter S & Rees C. (2015) Patient derived

measures of GI endoscopy: a mata-narrative review of the literature

Dillman, D.A. (2009). Internet, Mail and mixed-Mode Surveys: The Tailored Design Method.

New York: John Wiley & Sons.

Gleeson H, Calderon, A, Swami, V. Deighton J, Wolpert M & Edbrooke-Childs J. (2016)

Systematic review of approaches to using patient experience data for quality improvement in

healthcare settings BMJ Open. 6:e011907

Independent Cancer Taskforce (2015) Achieving World Class Cancer Outcomes. Downloaded

from http://www.cancerresearchuk.org/sites/default/files/achieving_world-

class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf

Kings Fund. (2009) The point of care Measures of patients’ experience in hospital: purpose

methods and uses. Downloaded from https://www.kingsfund.org.uk/sites/default/files/Point-

of-Care-Measures-of-patients-experience-in-hospital-Kings-Fund-July-2009_0.pdf.

O’Reilly D A. (2017) The Manchester Cancer Jaundice Pathway Downloaded from

http://www.cancerresearchuk.org/health-professional/diagnosis/accelerate-coordinate-

evaluate-ace-programme/ace-findings-and-resources#ACE_resources1

Quality Health. (2017) National Cancer Patient Experience Survey 2016 National Results

Summary http://www.ncpes.co.uk/reports/2016-reports/national-reports-1/3572-cpes-2016-

national-report/file

Sapsford R. (20070 Survey Research. Sage

http://www.ncpes.co.uk/reports/2016-reports/national-reports-1/3572-cpes-2016-national-report/file

http://www.ncpes.co.uk/reports/2016-reports/national-reports-1/3572-cpes-2016-national-report/file

24 | P a g e

Appendix A Glossary

ACE Acceleration, Coordination and Evaluation

CNS Clinical Nurse Specialist

CPES National Cancer Patient Experience Survey

CRUK Cancer Research UK

CT Computerised Tomography

GP General Practitioner

MDC Multidisciplinary Diagnostic Centre

MDT Multidisciplinary Team

NHS National Health Service

NYC No-Yes Clinic

PRU Policy Research Unit for Cancer Awareness, Screening and Early Diagnosis

SCAN Suspected Cancer pathway

25 | P a g e

Appendix B: Survey

ACE Programme Wave 2

Multidisciplinary Diagnostic Centre based pathways for the diagnosis of Cancer.

Patient Experience survey

<SITE>

This questionnaire is about your care and treatment at the Multidisciplinary Diagnostic Centre MDC. Its purpose is to provide information which can help us monitor and improve the quality of health services for future patients.

Who should complete this questionnaire?

The questionnaire should be answered by the person who attended the MDC clinic at <site>. If that person needs help to complete the questionnaire, the answers should be from their point of view, not the point of view of the person who is helping.

What happens to the information?

The information in this survey will be sent to Newcastle University to be analysed. The researchers there will not receive any personal information about you, only the details you complete on the survey. By returning the survey you are consenting to have your responses included in the analysis.

Completing the questionnaire

For each question please tick clearly inside the box that is closest to your views. Don’t worry if you make a mistake; simply cross out the mistake and put a tick in the correct box. Please DO NOT write your name or address anywhere on the questionnaire

Taking part in this survey is voluntary

If you have questions about the MDC and your care please contact: <site contact>

Please return complete questionnaires to: <SITE>

If you have any queries about the questionnaire please contact Dr Jen Howse [email protected]

http://www.england.nhs.uk/

The first questions are about before you were given a diagnosis:

1. How long was it from the time you first thought something might be wrong with you until you first contacted your GP?


being diagnosed

Less than 1 week

Less than 1 month

1 to 3 months

4 to 6 months

More than 6 months ago

Don’t know

2. Before you were told that you needed to go to hospital about your symptoms, how many times did you see your GP about your health problems?


being diagnosed

I saw my GP once

I saw my GP twice

I saw my GP three or 4 times

I saw my GP five times or more

Don’t know / can’t say


Yes, I had a full explanation

I had some explanation

I had a little explanation but

would have liked more


I did not see my GP/I went

directly to the hospital

4. Were you given an explanation of the purpose of the visit and what it would involve?

Yes, completely

Yes, to some extent

No, but would have liked an

explanation


Don’t know / I can’t remember

5. Before your visit to the MDC, were you given written information about what to expect at your visit?

Yes, it was easy to understand


understand

No, but I would have liked

written information

I did not need written

information

Don’t know / can’t remember

27 | P a g e

6. Before your visit to the MDC, were you told you could bring a relative or friend with you?

Yes

No




The next questions are about the tests that took place at the MDC appointment.

Thinking back to the appointment….

7. On the day, did you have all the information you needed about your tests?

(tick all that apply)

Yes

No, I would have liked more

written information


verbal information

I did not need/want any

information


8. Overall, how did you feel about the length of time it took for the tests to be done?

It was about right

It was a little too long

It was much too long

Don’t know/can’t remember

9. Were the results of the tests explained in a way you could understand?

Yes, completely

Yes, to some extent

No, I did not understand the

explanation

I did not have an explanation,

but I would have liked one



The next questions are about when you found out what was the matter with you. Thinking back to when you were first given a diagnosis . . . .

10. Who first told you about your diagnosis?

Hospital Doctor

Nurse Specialist

GP (Family Doctor)


Family member / friend

28 | P a g e

11. When you were first told your diagnosis, had you been told you could bring a relative or friend with you?

Yes

No




12. Did you understand the explanation of what was wrong with you?

Yes, I completely understood it

Yes, I understood most of it

No, I did not understand it

Can’t remember

13. When you were first given your diagnosis, were you offered written information about what would happen next?

Yes and it was easy to

understand

Yes but it was difficult to

understand

No


14. Were you given the opportunity to ask questions?

Yes

No

I felt I could not ask


15. Were you offered a record/written summary of your consultation and next steps at the clinic or by post?

Yes

No


16. Did MDC staff give you information about lifestyle or other advice to improve your health or manage your condition?

Yes

No, but I would have like

information



29 | P a g e

The next question relates to your experience as a whole . . .

17. Did the different people treating and caring for you (such as GP, hospital doctors, specialist nurses and navigators) work well together to give you the best possible care?

Yes, always

Yes, most of the time

Yes, some of the time

No, never


About you

18. What is your sex?

Male

Female

Prefer not to say

19. What age are you?

16 – 24

25 – 34

35 – 44

45 – 54

55 – 64

65 – 74

75 – 84

85+

20. What is your ethnic group?

White

Mixed / multiple ethnic groups

Asian / Asian British

Black / African / Caribbean /

Black British

Prefer not to say

21. Are your day to day activities limited because of a health problem or disability which has lasted, or is expected to last, at least 12 months? (Include any issues related to old age)

Yes, limited a lot

Yes, limited a little

No

Prefer not to say

Appendix C: Scored Survey

ACE Programme Wave 2

Multidisciplinary Diagnostic Centre based pathways for the diagnosis of Cancer.

Patient Experience survey

<SITE>

This questionnaire is about your care and treatment at the Multidisciplinary Diagnostic Centre MDC. Its purpose is to provide information which can help us monitor and improve the quality of health services for future patients.

Who should complete this questionnaire?

The questionnaire should be answered by the person who attended the MDC clinic at <site>. If that person needs help to complete the questionnaire, the answers should be from their point of view, not the point of view of the person who is helping.

What happens to the information?

The information in this survey will be sent to Newcastle University to be analysed. The researchers there will not receive any personal information about you, only the details you complete on the survey. By returning the survey you are consenting to have your responses included in the analysis.

Completing the questionnaire

For each question please tick clearly inside the box that is closest to your views. Don’t worry if you make a mistake; simply cross out the mistake and put a tick in the correct box. Please DO NOT write your name or address anywhere on the questionnaire

Taking part in this survey is voluntary

If you have questions about the MDC and your care please contact: <site contact>

Please return complete questionnaires to: <SITE>

If you have any queries about the questionnaire please contact Dr Jen Howse [email protected]

http://www.england.nhs.uk/

The first questions are about before you were given a diagnosis:

1. How long was it from the time you first thought something might be wrong with you until you first contacted your GP?


being diagnosed

Less than 1 week

Less than 1 month

1 to 3 months

4 to 6 months

More than 6 months ago

Don’t know

2. Before you were told that you needed to go to hospital about your symptoms, how many times did you see your GP about your health problems?


being diagnosed

I saw my GP once

I saw my GP twice

I saw my GP three or 4 times

I saw my GP five times or more

Don’t know / can’t say


1 Yes, I had a full explanation

0 I had some explanation

0 I had a little explanation but

would have liked more


I did not see my GP/I went

directly to the hospital

4. Were you given an explanation of the purpose of the visit and what it would involve?

1 Yes, completely

0 Yes, to some extent

0 No, but would have liked an

explanation


Don’t know / I can’t remember

5. Before your visit to the MDC, were you given written information about what to expect at your visit?

1 Yes, it was easy to understand

0 Yes, but it was difficult to

understand

0 No, but I would have liked

written information

I did not need written

information


32 | P a g e

6. Before your visit to the MDC, were you told you could bring a relative or friend with you?

1 Yes

0 No




The next questions are about the tests that took place at the MDC appointment.

Thinking back to the appointment….

7. On the day, did you have all the information you needed about your tests?

(tick all that apply)

Yes


written information


verbal information

I did not need/want any

information


8. Overall, how did you feel about the length of time it took for the tests to be done?

1 It was about right

0 It was a little too long

0 It was much too long

Don’t know/can’t remember

9. Were the results of the tests explained in a way you could understand?

1 Yes, completely

0 Yes, to some extent

0 No, I did not understand the

explanation

0 I did not have an explanation,

but I would have liked one



The next questions are about when you found out what was the matter with you. Thinking back to when you were first given a diagnosis . . . .

10. Who first told you about your diagnosis?

Hospital Doctor

Nurse Specialist

GP (Family Doctor)


Family member / friend

33 | P a g e

11. When you were first told your diagnosis, had you been told you could bring a relative or friend with you?

1 Yes

0 No




12. Did you understand the explanation of what was wrong with you?

1 Yes, I completely understood it

0 Yes, I understood most of it

0 No, I did not understand it

Can’t remember

13. When you were first given your diagnosis, were you offered written information about what would happen next?

1 Yes and it was easy to

understand

0 Yes but it was difficult to

understand

0 No


14. Were you given the opportunity to ask questions?

1 Yes

0 No

0 I felt I could not ask


15. Were you offered a record/written summary of your consultation and next steps at the clinic or by post?

1 Yes

0 No


16. Did MDC staff give you information about lifestyle or other advice to improve your health or manage your condition?

1 Yes

0 No, but I would have like

information



34 | P a g e

The next question relates to your experience as a whole . . .

17. Did the different people treating and caring for you (such as GP, hospital doctors, specialist nurses and navigators) work well together to give you the best possible care?

1 Yes, always

0 Yes, most of the time

0 Yes, some of the time

0 No, never


About you

18. What is your sex?

Male

Female

Prefer not to say

19. What age are you?

16 – 24

25 – 34

35 – 44

45 – 54

55 – 64

65 – 74

75 – 84

85+

20. What is your ethnic group?

White

Mixed / multiple ethnic groups

Asian / Asian British

Black / African / Caribbean /

Black British

Prefer not to say

21. Are your day to day activities

limited because of a health problem or

disability which has lasted, or is

expected to last, at least 12 months?

(Include any issues related to old age)

Yes, limited a lot

Yes, limited a little

No

Prefer not to say

Appendix D Results

Tota

l

Air

edal

e

Leed

s

Lon

do

n

Man

ches

ter

-

Pen

nin

e

Man

ches

ter

-

Sou

th

Oxf

ord

Number of surveys returned 256 64 63 19 46 51 13

Total number seen 842 151 278 103 112 116 82

Return Rate 30% 42% 23% 18% 41% 44% 16%

How long was it from the time you first thought something might be wrong with you until you first contacted your GP?

Number of complete responses 92.2% (236)

95.3% (61)

100% (63)

100% (19)

100% (46)

66.7% (34)

100% (13)

I did not see my GP before being diagnosed

4% (9)

7% (4)

3% (2)

0% (0)

2% (1)

3% (1)

8% (1)

less than 1 week 15% (36)

18% (11)

10% (6)

26% (5)

17% (8)

9% (3)

23% (3)

Less than 1 month 36% (86)

28% (17)

40% (25)

37% (7)

37% (17)

50% (17)

23% (3)

1 to 3 months 27% (64)

30% (18)

27% (17)

32% (6)

28% (13)

15% (5)

38% (5)

4 to 6 months 6% (15)

3% (2)

8% (5)

0% (0)

13% (6)

3% (1)

8% (1)

More than 6 months 6% (14)

8% (5)

8% (5)

5% (1)

2% (1)

6% (2)

0% (0)

Don't know 5% (12)

7% (4)

5% (3)

0% (0)

0% (0)

15% (5)

0% (0)

Before you were told that you needed to go to hospital about your symptoms, how many times did you see your GP about your health problems?


95.3% (61)

100% (63)

100% (19)

100% (46)

68.6% (35)

100% (13)

I did not see my GP before being diagnosed

5% (12)

11% (7)

3% (2)

0% (0)

2% (1)

3% (1)

8% (1)

I saw my GP once 36% (86)

41% (25)

38% (24)

42% (8)

15% (7)

46% (16)

46% (6)

I saw my GP twice 21% (50)

21% (13)

11% (7)

21% (4)

41% (19)

14% (5)

15% (2)

I saw my GP 3 or 4 times 26% (61)

23% (14)

30% (19)

21% (4)

33% (15)

20% (7)

15% (2)

I saw my GP five or more time 8% (19)

3% (2)

11% (7)

16% (3)

7% (3)

6% (2)

15% (2)

Don't know/can’t say 4% (9)

0% (0)

6% (4)

0% (0)

2% (1)

11% (4)

0% (0)

36 | P a g e

Did your GP explain why they had referred you to the MDC?


96.9% (62)

96.2% (61)

100% (19)

100% (46)

62.7% (32)

100% (13)

Yes I had a full explanation 60% (140)

63% (39)

51% (31)

47% (9)

65% (30)

72% (23)

62% (8)

I had some explanation 15% (36)

15% (9)

15% (9)

26% (5)

13% (6)

16% (5)

15% (2)

I had a little explanation but would have likes more

9% (20)

6% (4)

11% (7)

11% (2)

11% (5)

3% (1)

8% (1)

I had no explanation 9% (22)

5% (3)

13% (8)

16% (3)

9% (4)

6% (2)

15% (2)

I did not see my GP/ I went straight to hospital

6% (15)

11% (7)

10% (6)

0% (0)

2% (1)

3% (1)

0% (0)

Were you given an explanation of the purpose of the visit and what it would involve?


96.9% (62)

100% (63)

100% (19)

100% (46)

68.6% (35)

100% (13)

Yes, completely 61% (144)

73% (45)

46% (29)

53% (10)

67% (31)

57% (20)

69% (9)

Yes, to some extent 25% (60)

21% (13)

33% (21)

21% (4)

22% (10)

26% (9)

23% (3)

No, but I would have liked an explanation

6% (15)

3% (2)

8% (5)

16% (3)

7% (3)

6% (2)

0% (0)

I had no explanation 4% (10)

2% (1)

8% (5)

5% (1)

4% (2)

0% (0)

8% (1)

Don’t know/ I can't remember 4% (9)

2% (1)

5% (3)

5% (1)

0% (0)

11% (4)

0% (0)

Before your visit to the MDC, were you given written information about what to expect at your visit?


96.9% (62)

100%

(63) 100%

(19) 100%

(46) (68.6%)

35 100%

(13)

Yes, it was easy to understand 67%

(158) 68% (41)

54% (34)

58% (11)

80% (37)

71% (25)

77% (10)

Yes, but it was difficult to understand

6% (14)

2% (1)

10% (6)

11% (2)

4% (2)

9% (3)

0% (0)

No, but I would have liked written information

14% (32)

13% (8)

17% (11)

21% (4)

7% (3)

9% (3)

23% (3)

I did not need written information

9% (22)

12% (7)

16% (10)

5% (1)

7% (3)

3% (1)

0% (0)

Don't know/ Can't remember 4%

(10) 5% (3)

3% (2)

5% (1)

2% (1)

9% (3)

0% (0)

Before your visit to the MDC, were you told you could bring a relative or friend with you?


98.4% (63)

100% (63)

94.7% (18)

100% (46)

100% (51)

100% (13)

Yes 72%

(182) 69% (43)

59% (37)

61% (11)

87% (40)

86% (44)

54% (7)

No 13% (33)

15% (9)

17% (11)

28% (5)

7% (3)

4% (2)

23% (3)

It was not necessary 7%

(18) 6% (4)

11% (7)

6% (1)

2% (1)

4% (2)

23% (3)

I was told by phone or letter 4% (9)

2% (1)

3% (2)

6% (1)

4% (2)

6% (3)

0% (0)

Don’t know/Can't remember 4%

(11) 8% (5)

10% (6)

0% (0)

0% (0)

0% (0)

0% (0)

37 | P a g e

On the day, did you have all the information you needed about your tests? (Respondents were able to choose more than one response)

Number of complete responses 263 62 63 20 47 54 15

Yes 86%

(225) 84% (53)

80% (51)

75% (15)

98% (46)

91% (49)

73% (11)

No, I would have liked more written information

5% (14)

5% (3)

9% (6)

10% (2)

0% (0)

2% (1)

13% (2)

No, I would have liked more verbal information

4% (11)

2% (1)

6% (4)

10% (2)

2% (1)

4% (2)

7% (1)

I did not need/want any information

3% (8)

6% (4)

0% (0)

5% (1)

0% (0)

4% (2)

7% (1)

Don't know/ can't remember 2% (5)

3% (2)

5% (3)

0% (0)

0% (0)

0% (0)

0% (0)

Overall, how did you feel about the length of time it took for the tests to be done?

Number of complete responses 98.8%

253 96.9%

(62) 100%

(63) 94.7%

(18) 100%

(46) 100%

(51) 100%

(13)

It was about right 89%

(226) 97% (60)

90% (57)

67% (12)

83% (38)

92% (47)

92% (12)

It was a little too long 8%

(20) 0% (0)

8% (5)

17% (3)

15% (7)

8% (4)

8% (1)

It was much too long 1% (2)

0% (0)

0% (0)

6% (1)

2% (1)

0% (0)

0% (0)


3% (2)

2% (1)

11% (2)

0% (0)

0% (0)

0% (0)

Were the results of the tests explained in a way you could understand?


96.9% (62)

100% (63)

94.7% (18)

100% (46)

100% (51)

100% (13)

Yes, completely 80%

(202) 82% (51)

70% (44)

50% (9)

87% (40)

96% (49)

69% (9)

Yes, to some extent 15% (37)

10% (6)

27% (17)

28% (5)

11% (5)

4% (2)

15% (2)

No, I did not understand the explanation

2% (4)

2% (1)

2% (1)

11% (2)

0% (0)

0% (0)

0% (0)

I did not have an explanation, but I would have liked one

2% (6)

3% (2)

0% (0)

11% (2)

2% (1)

0% (0)

8% (1)

I did not need an explanation 0% (1)

0% (0)

0% (0)

0% (0)

0% (0)

0% (0)

8% (1)


3% (2)

2% (1)

0% (0)

0% (0)

0% (0)

0% (0)

Who first told you about your diagnosis?

Number of complete responses (93.0%)

238 96.9%

(62) 92.1%

(58) 78.9%

(15) 95.7%

(44) 92.2%

(47) 92.4%

(12)

Hospital Doctor 63%

(151) 73% (45)

34% (20)

87% (13)

73% (32)

79% (37)

33% (4)

Nurse specialist 19% (46)

18% (11)

43% (25)

7% (1)

9% (4)

0% (0)

42% (5)

GP (family doctor) 15% (35)

8% (5)

19% (11)

0% (0)

16% (7)

19% (9)

25% (3)

Another health professional 2% (4)

2% (1)

2% (1)

7% (1)

2% (1)

0% (0)

0% (0)

Family member/ friend 1% (2)

0% (0)

2% (1)

0% (0)

0% (0)

2% (1)

0% (0)

38 | P a g e

When you were first told your diagnosis, had you been told you could bring a relative or friend with you?


98.4% (63)

92.1% (58)

78.9% (15)

95.7% (44)

92.2% (47)

92.4% (12)

Yes 65%

(150) 70% (44)

44% (27)

67% (12)

87% (39)

77% (24)

33% (4)

No 10% (24)

10% (6)

13% (8)

17% (3)

4% (2)

6% (2)

25% (3)

It was not necessary 16% (37)

16% (10)

29% (18)

11% (2)

7% (3)

3% (1)

25% (3)

I was told by phone or letter 4%

(10) 0% (0)

8% (5)

0% (0)

2% (1)

6% (2)

17% (2)

Don't know/ can't remember 4%

(10) 5% (3)

6% (4)

6% (1)

0% (0)

6% (2)

0% (0)

Did you understand the explanation of what was wrong with you?


98.4% (63)

98.4% (62)

94.7% (18)

97.8% (45)

60.8% (31)

92.4% (12)

Yes, I completely understood it 65%

(151) 76% (48)

48% (30)

50% (9)

67% (30)

84% (26)

67% (8)

Yes. I understood most of it 24% (55)

17% (11)

34% (21)

22% (4)

29% (13)

10% (3)

25% (3)

No, I did not understand it 5%

(11) 5% (3)

10% (6)

6% (1)

2% (1)

0% (0)

0% (0)

Can't remember 6%

(14) 2% (1)

8% (5)

22% (4)

2% (1)

6% (2)

8% (1)

When you were first given your diagnosis, were you offered written information about what would happen next?


228 95.3%

(61) 98.4%

(62) 94.7%

(18) 95.7%

(44) 60.8%

(31) 92.4%

(12)

Yes and it was easy to understand 60%

(137) 69% (42)

47% (29)

61% (11)

68% (30)

58% (18)

58% (7)

Yes, but it was difficult to understand

4% (9)

7% (4)

5% (3)

6% (1)

0% (0)

3% (1)

0% (0)

No 25% (56)

23% (14)

27% (17)

17% (3)

25% (11)

29% (9)

17% (2)

Don't know/Can't remember 11% (26)

2% (1)

21% (13)

17% (3)

7% (3)

10% (3)

25% (3)

Were you given the opportunity to ask questions?


230 98.4%

(63) 98.4%

(62) 94.7%

(18) 97.8%

(45) 58.8%

(30) 92.4%

(12)

Yes 93%

(215) 100%

(63) 90% (56)

83% (15)

98% (44)

90% (27)

83% (10)

No 2% (4)

0% (0)

3% (2)

6% (1)

0% (0)

0% (0)

8% (1)

I felt I could not ask 1% (2)

0% (0)

3% (2)

0% (0)

0% (0)

0% (0)

0% (0)

Don’t know/can't remember 4% (9)

0% (0)

3% (2)

11% (2)

2% (1)

10% (3)

8% (1)

Were you offered a record/written summary of your consultation and next steps at the clinic or by post?


96.9% (62)

98.4% (62)

94.7% (18)

97.8% (45)

58.8% (30)

92.4% (12)

Yes 62%

(143) 65% (40)

52% (32)

67% (12)

73% (33)

53% (16)

83% (10)

No 27% (61)

29% (18)

35% (22)

17% (3)

18% (8)

33% (10)

0% (0)


6% (4)

13% (8)

17% (3)

9% (4)

13% (4)

17% (2)

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Did MDC staff give you information about lifestyle or other advice to improve your health or manage your condition?


96.9% (62)

98.4% (62)

94.7% (18)

97.8% (45)

56.9% (29)

92.4% (12)

Yes 59%

(134) 66% (41)

47% (29)

56% (10)

73% (33)

59% (17)

33% (4)

No, But I would have liked information

11% (26)

6% (4)

19% (12)

11% (2)

7% (3)

10% (3)

17% (2)

It was not necessary 27% (61)

27% (17)

31% (19)

22% (4)

20% (9)

24% (7)

42% (5)


0% (0)

3% (2)

11% (2)

0% (0)

7% (2)

8% (1)

Did the different people treating and caring for you (such as GP, hospital doctors, specialist nurses and navigators) work well together to give you the best possible care?


95.3% (61)

100% (63)

100% (19)

97.8% (45)

92.1% (47)

100% (13)

Yes, always 82%

(204) 87% (53)

63% (40)

58% (11)

96% (43)

98% (46)

85% (11)

Yes, most of the time 10% (26)

11% (7)

17% (11)

32% (6)

0% (0)

0% (0)

15% (2)

Yes, some of the time 3% (7)

2% (1)

8% (5)

0% (0)

2% (1)

0% (0)

0% (0)

No, never 1% (3)

0% (0)

3% (2)

5% (1)

0% (0)

0% (0)

0% (0)


0% (0)

8% (5)

5% (1)

2% (1)

2% (1)

0% (0)

What is your sex?


95.3% (61)

100% (63)

100% (19)

97.8% (45)

94.1% (48)

100% (13)

Male 46%

(114) 49% (30)

46% (29)

47% (9)

47% (21)

38% (18)

54% (7)

Female 53%

(131) 51% (31)

51% (32)

53% (10)

51% (23)

60% (29)

46% (6)

Prefer not to say 2% (4)

0% (0)

3% (2)

0% (0)

2% (1)

2% (1)

0% (0)

What age are you?


95.3% (61)

96.8% (61)

100% (19)

96.7% (44)

92.2% (47)

100% (13)

16-24 0% (1)

2% (1)

0% (0)

0% (0)

0% (0)

0% (0)

0% (0)

25-34 1% (3)

2% (1)

0% (0)

5% (1)

0% (0)

2% (1)

0% (0)

35-44 3% (8)

7% (4)

3% (2)

0% (0)

0% (0)

4% (2)

0% (0)

45-54 11% (26)

8% (5)

13% (8)

21% (4)

7% (3)

6% (3)

23% (3)

55-64 17% (42)

13% (8)

18% (11)

21% (4)

18% (8)

21% (10)

8% (1)

65-74 30% (74)

23% (14)

33% (20)

26% (5)

43% (19)

30% (14)

15% (2)

75-84 28% (69)

31% (19)

28% (17)

21% (4)

25% (11)

28% (13)

38% (5)

85+ 9%

(22) 15%

(9) 5% (3)

5% (1)

7% (3)

9% (4)

15% (2)

40 | P a g e

What is your ethnic group?


95.3% (61)

100% (63)

100% (19)

97.8% (45)

94.1% (48)

100% (13)

White 90%

(224) 95% (58)

87% (55)

68% (13)

96% (43)

90% (43)

92% (12)

Mixed/multiple ethnic groups 1% (2)

0% (0)

2% (1)

0% (0)

2% (1)

0% (0)

0% (0)

Asian/ Asian British 3% (8)

3% (2)

3% (2)

5% (1)

0% (0)

6% (3)

0% (0)

Black/ African / Caribbean / Black British

3% (7)

0% (0)

2% (1)

26% (5)

0% (0)

2% (1)

0% (0)


2% (1)

6% (4)

0% (0)

2% (1)

2% (1)

8% (1)

Are your day to day activities limited because of a health problem or disability which has lasted, or is expected to last, at least 12 months? (Include any issues related to old age)


95.3% (61)

100% (63)

100% (19)

97.8% (45)

94.1% (48)

100% (13)

Yes, limited a lot 29% (73)

25% (15)

40% (25)

37% (7)

22% (10)

29% (14)

15% (2)

Yes, limited a little 29% (73)

31% (19)

29% (18)

32% (6)

29% (13)

27% (13)

31% (4)

No 39% (96)

43% (26)

29% (18)

32% (6)

42% (19)

42% (20)

54% (7)


2% (1)

3% (2)

0% (0)

7% (3)

2% (1)

0% (0)

Number of positive responses

Number of negative responses

Lower 95% CI

National Average

Higher 95% CI

Did your GP explain why they had referred you to the MDC? 140 78 57.6% 64.2% 70.3%

Were you given an explanation of the purpose of the visit and what it would involve? 144 85 56.5% 62.9% 68.9%

Before your visit to the MDC, were you given written information about what to expect at your visit? 158 46 71.2% 77.5% 82.6%

Before your visit to the MDC, were you told you could bring a relative or friend with you? 182 33 79.2% 84.7% 88.9%

Overall, how did you feel about the length of time it took for the tests to be done? 226 22 86.9% 91.1% 94.1%

Were the results of the tests explained in a way you could understand? 202 47 75.8% 81.1% 85.5%

When you were first told your diagnosis, had you been told you could bring a relative or friend with you? 150 24 80.3% 86.2% 90.5%

Did you understand the explanation of what was wrong with you? 151 66 63.2% 69.6% 75.3%

When you were first given your diagnosis, were you offered written information about what would happen next?

137 65 61.1% 67.8% 73.9%

Were you given the opportunity to ask questions? 215 6 94.2% 97.3% 98.7%

Were you offered a record/written summary of your consultation and next steps at the clinic or by post? 143 61 63.3% 70.0% 75.8%

Did MDC staff give you information about lifestyle or other advice to improve your health or manage your condition?

134 26 77.3% 83.8% 88.7%

Did the different people treat and caring for you (such as GP, hospital doctors, specialist nurses and navigators) work together to give you the best possible care?

204 36

79.9% 85.0% 89.0%

42 | P a g e

ace wave 2 patient experience survey - cancer research uk...piloted in england as part of the ace...

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