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The paediatric Crohn’s disease morbidity index (PCD-MI); development of a tool to assess long-term disease burden using a data driven approach

The paediatric Crohn’s disease morbidity index (PCD-MI); development of a tool to assess long-term disease burden using a data driven approach
The paediatric Crohn’s disease morbidity index (PCD-MI); development of a tool to assess long-term disease burden using a data driven approach
Background/Objective–
Heterogeneity and chronicity of Crohn’s disease (CD) make prediction of outcomes difficult. To date, no longitudinal measure can quantify burden over a patient’s disease course, preventing assessment and integration into predictive modelling. Here, we aimed to demonstrate the feasibility of constructing a data driven, longitudinal disease burden score.

Methods–
Literature was reviewed for tools used in assessment of CD activity. Themes were identified to construct a paediatric CD morbidity index (PCD-MI). Scores were assigned to variables. Data were extracted automatically from the electronic patient records at Southampton Children’s Hospital, diagnosed from 2012 to 2019 (inclusive). PCD-MI scores were calculated, adjusted for duration of follow up and assessed for variation (ANOVA) and distribution (Kolmogorov-Smirnov).

Results–
Nineteen clinical/biological features across five themes were included in the PCD-MI including blood/faecal/radiological/endoscopic results, medication usage, surgery, growth parameters and extraintestinal manifestations. Maximal score was 100 after accounting for follow-up duration.

PCD-MI was assessed in 66 patients, mean age 12.5 years. Following quality filtering, 9528 blood/faecal test results and 1309 growth measures were included. Mean PCD-MI score was 14.95 (range 2.2-32.5), data were normally distributed (p=0.2) with 25% of patients having a PCD-MI <10. There was no difference in the mean PCD-MI when split by year of diagnosis, F-statistic 1.625, p=0.147.

Conclusions–
PCD-MI is a calculatable measure for a cohort of patients diagnosed over an 8-year period, integrating a wide-range of data with potential to determine high or low disease burden. Future iterations of the PCD-MI require refinement of included features, optimised scores and validation on external cohorts.
0277-2116
Ashton, James
03369017-99b5-40ae-9a43-14c98516f37d
Gurung, Abhilasha
14fda870-efc4-4286-8125-5f4515077c5b
Davis, Cai
a4aa4473-7285-41d5-8807-11717fdddb05
Seaby, Eleanor
ec948f42-007c-4bd8-9dff-bb86278bf03f
Coelho, Tracy
a78b627c-ea78-41e1-9553-0390921e3c93
Batra, Akshay
822f891e-87ca-41d9-b68d-27c395e88809
Afzal, Nadeem A.
62505946-2503-42ba-9b02-85513bb3ec87
Ennis, Sarah
7b57f188-9d91-4beb-b217-09856146f1e9
Beattie, R. Mark
55d81c7b-08c9-4f42-b6d3-245869badb71
Ashton, James
03369017-99b5-40ae-9a43-14c98516f37d
Gurung, Abhilasha
14fda870-efc4-4286-8125-5f4515077c5b
Davis, Cai
a4aa4473-7285-41d5-8807-11717fdddb05
Seaby, Eleanor
ec948f42-007c-4bd8-9dff-bb86278bf03f
Coelho, Tracy
a78b627c-ea78-41e1-9553-0390921e3c93
Batra, Akshay
822f891e-87ca-41d9-b68d-27c395e88809
Afzal, Nadeem A.
62505946-2503-42ba-9b02-85513bb3ec87
Ennis, Sarah
7b57f188-9d91-4beb-b217-09856146f1e9
Beattie, R. Mark
55d81c7b-08c9-4f42-b6d3-245869badb71

Ashton, James, Gurung, Abhilasha, Davis, Cai, Seaby, Eleanor, Coelho, Tracy, Batra, Akshay, Afzal, Nadeem A., Ennis, Sarah and Beattie, R. Mark (2023) The paediatric Crohn’s disease morbidity index (PCD-MI); development of a tool to assess long-term disease burden using a data driven approach. Journal of Pediatric Gastroenterology & Nutrition.

Record type: Article

Abstract

Background/Objective–
Heterogeneity and chronicity of Crohn’s disease (CD) make prediction of outcomes difficult. To date, no longitudinal measure can quantify burden over a patient’s disease course, preventing assessment and integration into predictive modelling. Here, we aimed to demonstrate the feasibility of constructing a data driven, longitudinal disease burden score.

Methods–
Literature was reviewed for tools used in assessment of CD activity. Themes were identified to construct a paediatric CD morbidity index (PCD-MI). Scores were assigned to variables. Data were extracted automatically from the electronic patient records at Southampton Children’s Hospital, diagnosed from 2012 to 2019 (inclusive). PCD-MI scores were calculated, adjusted for duration of follow up and assessed for variation (ANOVA) and distribution (Kolmogorov-Smirnov).

Results–
Nineteen clinical/biological features across five themes were included in the PCD-MI including blood/faecal/radiological/endoscopic results, medication usage, surgery, growth parameters and extraintestinal manifestations. Maximal score was 100 after accounting for follow-up duration.

PCD-MI was assessed in 66 patients, mean age 12.5 years. Following quality filtering, 9528 blood/faecal test results and 1309 growth measures were included. Mean PCD-MI score was 14.95 (range 2.2-32.5), data were normally distributed (p=0.2) with 25% of patients having a PCD-MI <10. There was no difference in the mean PCD-MI when split by year of diagnosis, F-statistic 1.625, p=0.147.

Conclusions–
PCD-MI is a calculatable measure for a cohort of patients diagnosed over an 8-year period, integrating a wide-range of data with potential to determine high or low disease burden. Future iterations of the PCD-MI require refinement of included features, optimised scores and validation on external cohorts.

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More information

Accepted/In Press date: 6 April 2023
e-pub ahead of print date: 21 April 2023
Published date: 21 April 2023

Identifiers

Local EPrints ID: 476619
URI: http://eprints.soton.ac.uk/id/eprint/476619
ISSN: 0277-2116
PURE UUID: 4b2ceeba-4a60-4d2e-8e9f-4aea9b8f3a32
ORCID for James Ashton: ORCID iD orcid.org/0000-0003-0348-8198
ORCID for Eleanor Seaby: ORCID iD orcid.org/0000-0002-6814-8648
ORCID for Sarah Ennis: ORCID iD orcid.org/0000-0003-2648-0869

Catalogue record

Date deposited: 10 May 2023 16:35
Last modified: 15 Aug 2024 02:15

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Contributors

Author: James Ashton ORCID iD
Author: Abhilasha Gurung
Author: Cai Davis
Author: Eleanor Seaby ORCID iD
Author: Tracy Coelho
Author: Akshay Batra
Author: Nadeem A. Afzal
Author: Sarah Ennis ORCID iD
Author: R. Mark Beattie

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