Endometriosis

This study has been commissioned by Healthcare Quality Improvement Partnership
as part of the Clinical Outcome Review Programme into Medical & Surgical care.
For information on how we use data click here

Data collection for study:    October 2022
Publication date:          Summer 2024   

Aim

To review remediable factors in the quality of care provided to patients aged 18 and over with a diagnosis of endometriosis between the 1st February 2018 - 31st July 2020

Participation

All NHS and independent hospital providers where patients with endometriosis might be admitted will be asked to participate in the study. Primary care practices will be asked to participate if it is identified that a patient selected for inclusion in the study was admitted to hospital following a referral from primary care.

Data collection

Patient identification spreadsheet
The patient identifier spreadsheet is designed to collect some basic data about patients aged 18 and over, who were admitted (including day case admissions) to hospital during the study period (1st February 2018- 31st July 2020) with a primary diagnosis for endometriosis (ICD10 codes N80.0-N80.9). For each patient identified, we are also asking for first time ever they appeared on your Patient Administration System, with an ICD10 code (N80.0-N80.9) for endometriosis and an OPCS code for laparoscopy or other related procedure (See worksheet 2 in the spreadsheet for details). We will use this information as a guide to identify the approximate timeframe when patients were most likely to have first been diagnosed with endometriosis.

Clinician questionnaires
We will limit the sample to 8 patients per hospital and a maximum of 3 questionnaires per consultant so as not to over-burden clinicians/ hospital resources. A questionnaire will be sent to the gynaecologist who was responsible for the care of the patient at the time of the ‘index’ admission. A questionnaire will also be sent to the primary care practitioner responsible for the patient at the time referral to hospital (where applicable).

Case note extracts for review
Case notes will be requested for all patients included in the peer review aspect of the study.

Organisational questionnaires
Questionnaires will be sent to all hospitals participating in the study via the online questionnaire system.
Please see the study protocol for more information.

Patient Participation
The initial Patient Participation Groups have now finished; however, we will be asking patients to complete a survey of their experience and are asking our patient group to help in the design of this.

Endometriosis patient servey
NCEPOD are running a short survey of patients' experiences of healthcare for this condition. If you are aged 18 and over, have endometriosis and want to share your views please click on the link to access the survey: Link to NCEPOD endometriosis patient survey
The survey will be open until the end of November 2023.

Any other queries relating to this study should also be addressed to endometriosis@ncepod.org.uk.
This page will be updated regularly so please check for further information.