Data collection for study: Closed Publication date:
Spring 2023
Aim:
To review of remediable factors in the quality of care provided to patients aged 16 and over with a diagnosis of Crohn’s disease who underwent a surgical procedure.
Objectives:
To identify patients with Crohn’s disease who undergo surgery and to investigate the quality of care provided throughout the pathway from admission to discharge
To evaluate the quality of preoperative care including the decision to undergo a procedure, pre-optimisation assessment, nutrition, medications, mental health etc
To assess the emergency care pathway for patients admitted for surgery via the Emergency Department
To assess the quality of perioperative and post operative care including delays to surgery, risk stratification, management of complications and nutrition
To assess organisational aspects of care including staffing, education, local and national guidelines and the infrastructure to deliver a high quality service
To look at the information, education and support provided to patients – in particular understanding surgery, mental well-being and pre-surgery optimisation
To investigate the effect of COVID-19 on the service
To produce recommendations to improve the quality of care for this patient group
Participation:
All acute hospital providers to which patients with Crohn’s disease might be admitted for treatment/surgery will be asked to participate in the study.
Data collection:
Focus groups
A series of patient focus groups were held in April 2021; the outputs from these meetings informed the discussions with the Study Advisory Group and fed into the design of the study protocol and data collection materials
Patient identification spreadsheet
Patients eligible for the study will be identified through completion of a patient identification spreadsheet designed to collect information. Patients aged 16 and older, who were admitted between September- February 2019/20 and September- February 2020/21 inclusive, are eligible for participation in this study.
Clinician Questionnaires
Up to 6 patients per hospital will be sampled for inclusion in the study. The clinician questionnaires will be disseminated via the online system
Case notes
Case note extracts relating to the index admission will be requested by NCEPOD. The full case note extract list can be found here. The returned case notes will be anonymised and peer reviewed by a multidisciplinary, multispecialty panel of case reviewers
Organisational Questionnaires
Currently being disseminated via the online system. The deadline for this questionnaire is 30th September 2022
Patient Survey
We are running a survey looking at the quality of care provided to Crohn's disease patients who have had surgery, and we want people with lived experience to have their say!
If you are aged over 16, have been diagnosed with Crohn's disease and have undergone surgery for your Crohn's disease treatment in the UK. All views will be kept entirely confidential and anonymous.
Any queries relating to this study should be also addressed to crohns@ncepod.org.uk .
This page will be updated regularly so please check for further information.