Retrospective Cohort Study
Copyright ©The Author(s) 2023. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Jun 28, 2023; 29(24): 3825-3842
Published online Jun 28, 2023. doi: 10.3748/wjg.v29.i24.3825
Regional variation in routes to diagnosis of cholangiocarcinoma in England from 2006 to 2017
Amy Zalin-Miller, Sophie Jose, Craig Knott, Lizz Paley, Daniela Tataru, Helen Morement, Mireille B Toledano, Shahid A Khan
Amy Zalin-Miller, Sophie Jose, Craig Knott, Department of Analytics, Health Data Insight CIC, Cambridge CB21 5XE, United Kingdom
Amy Zalin-Miller, Sophie Jose, Craig Knott, Lizz Paley, Daniela Tataru, National Disease Registration Service, NHS England, London E14 4PU, United Kingdom
Helen Morement, CEO, AMMF, London CM24 1QW, United Kingdom
Mireille B Toledano, MRC Centre for Environment and Health, School of Public Health, Imperial College London, London SW7 2BX, United Kingdom
Shahid A Khan, Liver Unit, Division of Digestive Diseases, Imperial College London, London W21NY, United Kingdom
Author contributions: Zalin-Miller A, Jose S, Morement H and Khan SA designed the study; Zalin-Miller A, Jose S and Khan SA wrote the manuscript; Knott C, Paley L and Toledano MB advised on the study; Knott C, Paley L, Tataru D, Morement H and Toledano MB reviewed the results and manuscript.
Supported by AMMF – The Cholangiocarcinoma Charity.
Institutional review board statement: Consent for this study was given by the National Disease Registration Service Project Proposal Panel in NHS England.
Informed consent statemen: NDRS has been granted specific legal permission to collect information about cancer patients without the need to seek consent.
Conflict-of-interest statement: Zalin-Miller A reports grants from AMMF, during the conduct of the study.
Data sharing statement: The data that support the findings of this study are available from NHS England, but restrictions apply to the availability of these data as they are not publicly available.
STROBE statement: The authors have read the STROBE Statement – checklist of items, and the manuscript was prepared and revised according to the STROBE Statement – checklist of items.
Open-Access: This article is an open-access article that was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: https://creativecommons.org/Licenses/by-nc/4.0/
Corresponding author: Amy Zalin-Miller, MSc, Senior Researcher, Department of Analytics, Health Data Insight CIC, Capital Park, Fulbourn, Cambridge CB21 5XE, United Kingdom. amy.zalin@nhs.net
Received: March 20, 2023
Peer-review started: March 20, 2023
First decision: April 27, 2023
Revised: May 5, 2023
Accepted: May 25, 2023
Article in press: May 25, 2023
Published online: June 28, 2023
ARTICLE HIGHLIGHTS
Research background

Cholangiocarcinoma (CCA), a cancer with rising incidence and poor survival, is often diagnosed late. Treatment options are limited for late stage patients. The only curative treatment for CCA is surgery, which is not feasible in patients with advanced disease, and response to systemic therapies at later stage is poor.

Research motivation

Late stage diagnosis presents a large barrier to improving outcomes for patients with CCA. Being diagnosed via an emergency presentation (EP) route is associated with later stage diagnoses, whereas earlier diagnoses may be made via the Two Week Wait (TWW) referral route through primary care clinicians. Geographic variation in the proportion of patients diagnosed via these routes is important to understand and explore, as some regions may be diagnosing patients via better managed and less urgent routes at an earlier stage. Reasoning and learning behind such variation could be shared to improve CCA patients’ prognoses.

Research objectives

We aimed to investigate routes to diagnosis of CCA over time, regional variation across England and influencing factors to understand if TWW referrals and EP routes to diagnosis differ across regions in England as we hypothesised.

Research methods

We conducted a retrospective cohort study including patients diagnosed with CCA from 2006-2017 in England. We linked electronic patient records to define routes to diagnosis and patient and tumour characteristics. We used linear probability models to investigate geographic variation in the proportions of patients diagnosed via TWW referral or EP across regions in England, adjusting for potential confounders.

Research results

Almost half of CCA patients in England from 2006-2017 were diagnosed via EP (49.6%), with just 13.8% diagnosed via TWW referrals. The proportion diagnosed via TWW referral doubled between 2006-2017 rising from 9.9% to 19.8%. Statistically significant variation in both the proportions diagnosed via a TWW referral and EP route was found across regions in England. Age, presence of comorbidities and underlying liver disease were independently associated with lower proportions of patients diagnosed via TWW referral and a higher proportion diagnosed via EP.

Research conclusions

We found significant geographic and socio-demographic variation in routes to diagnosis of CCA in England.

Research perspectives

There may be opportunities for knowledge sharing of good practice to improve diagnostic pathways where variation exists, such as education or awareness campaigns to increase public and clinician understanding of the common symptoms of CCA and increase diagnoses made by TWW urgent GP referrals. Further research is also warranted to identify and address the complex and multifactorial nature of the observed geographic differences, alongside exploring screening strategies and non-specific symptom diagnosis clinics as CCA often has no or non-specific symptoms.