Frequently asked questions
What is patient experience and where is the data from?
The patient experience data presented on the LCI NI tool come from the 2018 Northern Ireland Cancer Patient Experience Survey (NI CPES 2018).
Following the success of Cancer Patient Experience Surveys in England, Wales, Scotland and in Northern Ireland in 2015, the Public Health Agency (PHA) in Northern Ireland, with the Health and Social Care Health Board and Macmillan Cancer Support, funded a similar survey in Northern Ireland in 2018. Quality Health was appointed to design, administer, analyse and report on the survey. The overall response rate for the first NI CPES was 57%.
The survey questionnaire covered many aspects of patients' experiences of care, including whether patients were treated with dignity and respect, given information, involved in decisions, and whether their views and preferences were listened to and taken into account, for example:
- Were your treatment options explained to you?
- Were you assigned 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 needed?
A good patient experience is one where people with cancer feel supported, respected and meaningfully involved in decisions about their care.
The NI CPES 2018 questionnaire was sent to approximately 6,100 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 May 2017 and 31st October 2017.
More details on the survey can be found from the Quality Health website (accessed January 2019).
The NI CPES 2018 was administered by Quality Health on behalf of the Public Health Agency, the Health and Social Care Board and Macmillan Cancer Support.
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 May 2017 and 31st October 2017) 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.
3,478 patients responded to the NI CPES 2018.
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 within the relevant HSCT 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 HSCT (Trust pages) or All Northern Ireland (All Northern Ireland page). This number is not the same for each question because:
- 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.
This analysis has been prepared by Quality Health on behalf of Macmillan Cancer Support, the Public Health Agency and the Health and Social Care Board.
Scores relating to Q47 and Q48 of the NI CPES 2018 ('Patient had all the information needed about their radiotherapy beforehand' and 'Patient was given enough understandable information about whether their radiotherapy was working') are only visible for all of Northern Ireland and not for individual Trusts. This is because Northern Ireland's two radiotherapy centres are located in the Belfast Trust and the Western Trust, so responses from patients in other Trusts relating to radiotherapy treatment cannot be attributed to individual Trusts, nor can the scores for the Belfast and Western Trusts on these questions be considered fully representative.
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 2018.
The data contained in the NI CPES 2018 pages on the LCI tool relate only to questions which have been scored (questions on which patients expressed their views about their care). Indicator or routing questions, for example, ‘Have you had an operation?’ are not included.
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.
Full details and results of tests for statistically significant differences between different patient groups (based on demographic and clinical factors) are available in the NI CPES All Northern Ireland Data Tables (accessed January 2019).
However, caution should be exercised when interpreting this because of the relatively small size of the response group for some categories of patients.
As well as the full NI CPES 2018 report and the NI CPES 2018 Trust reports, which include benchmarking of NI scores against England CPES 2017 scores, you may also find the following links useful:
- NI CPES 2015 reports and data tables
- Top Tips Guide for Improving Patient Experience
- Improving the experience of care - An introductory guide to quality improvement
- Patient guide to using Cancer Patient Experience Survey
- Report - Improving care for people with cancer.