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Frequently asked questions

What is patient experience and where are the data from?

Patient experience for cancer patients has been measured for the first time in Northern Ireland in 2015.

Following the success of CPES (Cancer Patient Experience Surveys) in England and Wales, the Public Health Agency (PHA) in Northern Ireland, with Macmillan Cancer Support, funded a similar survey in Northern Ireland. Quality Health was appointed to design, administer, analyse and report on the survey. The overall response rate for the first NI CPES was 62%.

The survey questionnaire encompassed many aspects of experiences of care for a patient, including things like whether patients were treated with dignity and respect, given information, involved in decisions, and their views and preferences listened to and taken into account, for example:

  • Were you properly informed about your choices for care and treatment?
  • Were you given a clinical nurse specialist?
  • Were you called by your preferred name?
  • Were you seen by a hospital doctor as soon as you thought necessary?
    Were you given clear written information about what you should or should not do after leaving hospital?
  • Were you told about any possible side effects of treatment?
  • Were you given information by hospital staff about how to access financial support if need be?

These types of questions, gauging different aspects of ‘patient experience’, were included in the survey.

A good experience would be one where people with cancer feel supported, respected and meaningfully involved in decisions about their care. 

Key aspects for good experience include: high quality communication, meaningful involvement and coordinated care.

The 2015 Northern Ireland Cancer Patient Experience Survey (NI CPES) was sent to approximately 5,000 adult cancer patients who had received cancer care in Northern Ireland, (aged 16 and over) with a primary diagnosis of cancer who had been inpatients or day care patients and who were in active treatment between 1st December 2013 and 31st May 2014.

More details on the survey can be found from the Quality Health website (accessed December 2015).

The Northern Ireland Cancer Patient Experience Survey Programme was administered by Quality Health on behalf of the Public Health Agency (PHA) and Macmillan Cancer Support.

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How have people been allocated to Trusts in the NI CPES?

Data for each respondent has been allocated to the Health and Social Care Trust (HSCT) identified as the place they received their most recent treatment. 

Because many patients attend multiple hospitals for treatment, the methodology used for the NI CPES takes the last attendance in a hospital during the relevant data capture period (in this case 1st December 2013 to 31st May 2014) and allocates the patient to that Trust for the purposes of analysis. The questionnaire provided detailed instructions to respondents on how to complete the survey if they have attended more than one Trust for treatment.

3,217 patients responded to the 2015 NI CPES.

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What is the data and what do the different scores mean in the CPES?

The scores against each NI CPES question in the LCI tool reflect the proportion of respondents who selected those response(s) which suggest positive patient experience. The specific meaning of this varies according to the question wording and response options, but the wording of each item in the LCI tool should make it clear what the score actually means.

For example, the percentage of patients who were given a complete explanation of their diagnostic tests or the percentage of patients who said that nurses did NOT talk in front of them as if they were not there. Neutral responses, such as 'Don’t know' and 'I did not need an explanation', are not included in the denominator when computing the score.

The data have been presented in a map and table format to help show where each Health and Social Care Trust (HSCT) sits compared to other HSCT's and to the average percentage score for Northern Ireland.

Trust score – displays the percentage of people reporting a positive experience for each question. Statistically significant differences relative to all Northern Ireland are also highlighted.

All Northern Ireland – displays the overall score for Northern Ireland for each question.

Number of respondents – displays the absolute number of responses to each question from people in each HSC Trust (Trust pages) or All Northern Ireland (All Northern Ireland page). This number is not the same for each question for legitimate reasons – for example, not all questions are applicable for all respondents and so not all respondents answer all questions. Neutral responses, such as 'Don’t know' and 'I did not need an explanation', are not included in the denominator when computing the score.

Because many patients attend multiple hospitals for treatment, the methodology used for the CPES takes the last attendance in a hospital during the relevant data capture period (in this case 1st December 2013 to 31st May 2014) and allocates the patient to that Trust for the purposes of analysis. The questionnaire provided detailed instructions to respondents on how to complete the survey if they have attended more than one Trust for treatment.

This analysis has been prepared by Quality Health on behalf of Macmillan Cancer Support and the Public Health Agency (PHA).

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Why are scores for some NI CPES questions not available?

Scores relating to Q56 of the NI CPES (‘Did hospital staff do everything possible to control the side effects of radiotherapy?’), are only visible for Belfast HSCT. This is because at present, Belfast HSCT is the only Trust to offer radiotherapy treatment in Northern Ireland. The All Northern Ireland data for this question reflects the data for Belfast HSCT for the same reason.

Patient experience data is not available by council areas. Analysis of response data broken down by council area is not presented here because this level of analysis was not prioritised in the delivery of the NI CPES.

The data contained in these tables relate only to questions which have been scored (questions on which patients express their views about their care). Indicator or routing questions, for example, ‘Have you had an operation?’ are not included.

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Does experience of care vary for different people for patient experience?

Variations in patient experience between Trusts and tumour groups is evident.

Certain patient groups were also less likely to be positive than others about their care and treatment. Patients with a long term condition other than cancer, or multiple long-term conditions, were more likely to report negative experiences for example.
In addition, key driver analysis showed significant differences of patients’ experience of their care between those who had recurrent cancers and those who were being treated for the first time.
Patients being treated for the first time were more positive across 21 of the 62 scored questions.
However, caution should be exercised when interpreting this because of the relatively small size of the response group for some categories of patients.

These variations data are not currently available for individual HSCTs but are presented in the National, Trust and Methodology reports (accessed January 2016).

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Where can I find further information?

As well as the full NI CPES 2015 report, you may also find the following links useful:

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