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
Abstract
BACKGROUND

Incidence of cholangiocarcinoma (CCA) is rising, with overall prognosis re-maining very poor. Reasons for the high mortality of CCA include its late presentation in most patients, when curative options are no longer feasible, and poor response to systemic therapies for advanced disease. Late presentation presents a large barrier to improving outcomes and is often associated with diagnosis via mergency presentation (EP). Earlier diagnoses may be made by Two Week Wait (TWW) referrals through General practitioner (GP). We hypothesise that TWW referrals and EP routes to diagnosis differ across regions in England.

AIM

To investigate routes to diagnosis of CCA over time, regional variation and influencing factors.

METHODS

We linked patient records from the National Cancer Registration Dataset to Hospital Episode Statistics, Cancer Waiting Times and Cancer Screening Programme datasets to define routes to diagnosis and certain patient characteristics for patients diagnosed 2006-2017 in England. We used linear probability models to investigate geographic variation by assessing the proportions of patients diagnosed via TWW referral or EP across Cancer Alliances in England, adjusting for potential confounders. Correlation between the proportion of people diagnosed by TWW referral and EP was investigated with Spearman’s correlation coefficient.

RESULTS

Of 23632 patients diagnosed between 2006-2017 in England, the most common route to diagnosis was EP (49.6%). Non-TWW GP referrals accounted for 20.5% of diagnosis routes, 13.8% were diagnosed by TWW referral, and the remainder 16.2% were diagnosed via an ‘other’ or Unknown route. The proportion diagnosed via a TWW referral doubled between 2006-2017 rising from 9.9% to 19.8%, conversely EP diagnosis route declined, falling from 51.3% to 46.0%. Statistically significant variation in both the TWW referral and EP proportions was found across Cancer Alliances. Age, presence of comorbidity and underlying liver disease were independently associated with both a lower proportion of patients diagnosed via TWW referral, and a higher proportion diagnosed by EP after adjusting for other potential confounders.

CONCLUSION

There is significant geographic and socio-demographic variation in routes to diagnosis of CCA in England. Knowledge sharing of best practice may improve diagnostic pathways and reduce unwarranted variation.

Keywords: Cholangiocarcinoma, Route to diagnosis, Two Week Wait, Emergency presentation, Regional variation

Core Tip: We investigated changes to routes to diagnosis for cholangiocarcinoma patients across England’s 21 regional Cancer Alliances over a 12-year period, and factors associated with differences. We found almost half (49.6%) of 23632 patients in the study were diagnosed via emergency presentation, a route associated with late presentation, advanced disease and poorer outcomes. Those diagnosed by Two Week Wait referral through a primary care doctor, where earlier diagnoses are possible, increased from 9.8-19.8% from 2006-2017, still considered low. Significant regional variation was found, alongside the discovery that age, comorbidities and underlying liver disease had independent associations with their routes to diagnosis.