Which hospitals should be taking part in this study?
All hospitals in England, Wales, and Northern Ireland, that have a gynaecology department can take part in this study.
How can we identify patients for this study?
The patient identifier spreadsheet is designed to collect some basic data about patients aged 18 and over, with a diagnosis of endometriosis, who were admitted to hospital (as a day-case or for a longer hospital stay) between the 1st February 2018 - 31st July 2020. We would like you (with the help of your informatics team) to populate the spreadsheet with data for this population of patients. More information about the relevant ICD10 and OPCS codes can be found in the data collection spreadsheet on (worksheet 3).
Why are you asking for us to go that far back in the patient records, to identify the patients 1st ever recorded hospital admission with endometriosis?
We will use this information as a guide to identify approximately the timeframe when patients were most likely to have first been diagnosed with endometriosis. Once identified, we can review the patients full pathway of care (including prior to diagnosis).
Our patient administration system can only identify patients’ admissions to a certain point (when the system was installed), and therefore this might not be the patients 1st ever recorded hospital admission. Do we still submit?
You can still submit the patient identifier spreadsheet to us, as we can use that admission as a guide for the approximate timeframe for a patient’s first diagnosis of endometriosis. However, please note in your submission or contact the NCEPOD team to notify us that this is the case.
According to our electronic records, none of the patients identified have had a previous laparoscopy or procedure at our hospital. Can we still submit our spreadsheet?
Please inform the NCEPOD team ASAP if you find that none of the patients identified have a record of having their 1st EVER hospital admission, with either a previous laparoscopy or any other relevant diagnostic/treatment procedure (OPCS codes list provided), at your hospital.
I can’t fill complete all the fields on the case identification spreadsheet – will it still be accepted?
NCEPOD requires all of the fields to be populated, to proceed with our selection process. If you or your colleagues are experiencing any issues with populating the fields, please contact the NCEPOD team ASAP.
What will happen once we have submitted our data collection spreadsheet?
NCEPOD will import the information you have sent into our study database; we will then randomly select up to 8 patients per hospital to be included in the case review. For each of these selected patients we will upload a clinician questionnaire to our online system and ask the Local Reporter to invite the clinician who was involved in the patients care to complete this. We will also request for case notes relating to the patient’s admission to be sent to us for peer-review.
What questionnaires will be disseminated for this study?
Three separate questionnaires will be sent out or uploaded to our online system:
Clinician questionnaire
This questionnaire will track back throughout the patient’s history and will therefore require for the clinician to have access to the patient’s whole case note record. Instructions will be provided to pass the questionnaire on to the consultant gynaecologist who was responsible for the patients care. GP clinical and community organisational questionnaire
The GP surgery of patients selected for the case review will receive a questionnaire for the appropriate GP to complete regarding the patient’s care prior to diagnosis of endometriosis. Hospital organisational questionnaire
For all included hospitals, there will be an online questionnaire designed to collect data on the service provided to patients with endometriosis. Local reporters will be able to invite multiple clinicians to complete this questionnaire.
In addition, a panel of multi-disciplinary healthcare professionals with a working interest in the care of patients with endometriosis will be conducting a review of patient’s case notes. We will request selected extracts from the case note record for each patient selected for the case review. Further information will be available on the study page.
Alongside the questionnaires, we will be releasing an anonymous patient survey via the Qualtrics online survey tool.
For any other queries about the study, please contact the NCEPOD office on 0207 251 9060 or by email to endometriosis@ncepod.org.uk.