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The Pediatric Crohn Disease Morbidity Index (PCD-MI): Development of a Tool to Assess Long-Term Disease Burden Using
James J Ashton1,2, Abhilasha Gurung2, Cai Davis3
1From the Department of Human Genetics and Genomic Medicine, University of Southampton, Southampton, UK.
Insights
A new Pediatric Crohn
Area of Science:
- Gastroenterology and Hepatology
- Pediatric Inflammatory Bowel Disease Research
Background:
- Crohn's disease (CD) presents challenges in outcome prediction due to its heterogeneous and chronic nature.
- A lack of longitudinal measures hinders the quantification of disease burden over time and its integration into predictive models.
Purpose of the Study:
- To demonstrate the feasibility of creating a data-driven, longitudinal disease burden score for pediatric Crohn's disease.
- To develop and assess a novel Pediatric Crohn's Disease Morbidity Index (PCD-MI).
Main Methods:
- Literature review to identify CD activity assessment tools and themes for index construction.
- Development of the Pediatric Crohn's Disease Morbidity Index (PCD-MI) with assigned scores to variables.
- Automatic data extraction from electronic patient records (2012-2019) and calculation of PCD-MI scores, adjusted for follow-up duration.
Main Results:
- The PCD-MI incorporates 19 clinical/biological features across five themes, including lab results, medication, surgery, growth, and extraintestinal manifestations.
- The index was assessed in 66 pediatric patients (mean age 12.5 years), with a mean PCD-MI score of 14.95 (range 2.2-32.5).
- Data were normally distributed, with no significant difference in mean PCD-MI based on the year of diagnosis.
Conclusions:
- The PCD-MI is a calculable measure for a defined patient cohort, integrating diverse data to assess disease burden.
- This index has the potential to differentiate between high and low disease burden in pediatric Crohn's disease.
- Future work requires refinement of features, score optimization, and validation on external cohorts.
Background/Objective:
Heterogeneity and chronicity of Crohn 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 modeling. 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 pediatric 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/fecal/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/fecal 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, optimized scores, and validation on external cohorts.
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