Prospective Study
Copyright ©The Author(s) 2021. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Jul 21, 2021; 27(27): 4468-4480
Published online Jul 21, 2021. doi: 10.3748/wjg.v27.i27.4468
Determinants of disease-specific knowledge among children with inflammatory bowel disease and their parents: A multicentre study
Kinga Kowalska-Duplaga, Anita Gawlik-Scislo, Elzbieta Krzesiek, Elzbieta Jarocka-Cyrta, Izabella Łazowska-Przeorek, Mariusz Duplaga, Aleksandra Banaszkiewicz
Kinga Kowalska-Duplaga, Department of Pediatrics, Gastroenterology and Nutrition, Jagiellonian University Medical College, Kraków 30-663, Poland
Anita Gawlik-Scislo, Children's Hospital of the Medical University of Warsaw, Medical University of Warsaw, Warsaw 02-091, Poland
Elzbieta Krzesiek, Department of Pediatrics, Gastroenterology and Nutrition, Wroclaw Medical University, Wroclaw 50-369, Poland
Elzbieta Jarocka-Cyrta, Department of Pediatrics, University of Warmia and Mazury, Olsztyn 10-561, Poland
Izabella Łazowska-Przeorek, Aleksandra Banaszkiewicz, Department of Pediatric Gastroenterology and Nutrition, Medical University of Warsaw, Warsaw 02-091, Poland
Mariusz Duplaga, Department of Health Promotion and e-Health, Jagiellonian University Medical College, Kraków 31-066, Poland
Author contributions: Kowalska-Duplaga K participated in design and oversight of the study, was involved with data collection, made critical revisions related to important intellectual content of the manuscript, drafted the manuscript; Gawlik-Scislo A involved with data collection, interpreted the results of the study; Krzesiek E involved with data collection; Jarocka-Cyrta E involved with data collection; Łazowska-Przeorek I involved with data collection, interpreted the results of the study; Duplaga M performed data analysis, drafted the manuscript, making critical revisions related to important intellectual content of the manuscript, interpreted the results of the study; Banaszkiewicz A participated in design and oversight of the study, involved with data collection, drafted the manuscript, making critical revisions related to important intellectual content of the manuscript; all authors read and approved the final manuscript.
Institutional review board statement: The study was approved by the University Bioethical Committee (Consent No. AKBE/120/16).
Conflict-of-interest statement: The authors declare no conflict of interests.
Data sharing statement: No additional data are available.
CONSORT 2010 statement: The authors have read the CONSORT 2010 Statement, and the manuscript was prepared and revised according to the CONSORT 2010 Statement.
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: http://creativecommons.org/Licenses/by-nc/4.0/
Corresponding author: Aleksandra Banaszkiewicz, PhD, Professor, Department of Pediatric Gastroenterology and Nutrition, Medical University of Warsaw, Zwirki i Wigury 63a, Warsaw 02-091, Poland. aleksandra.banaszkiewicz@wum.edu.pl
Received: April 6, 2021
Peer-review started: April 6, 2021
First decision: May 27, 2021
Revised: June 2, 2021
Accepted: July 5, 2021
Article in press: July 5, 2021
Published online: July 21, 2021
Processing time: 103 Days and 20 Hours
ARTICLE HIGHLIGHTS
Research background

Patient knowledge is associated with increased treatment compliance and improvement of symptoms in a variety of chronic diseases, including inflammatory bowel disease (IBD). IBD-knowledge inventory device (IBD-KID) was developed and validated specifically as a tool to measure disease-related knowledge in children with IBD and their parents.

Research motivation

Until now, assessment of IBD-related knowledge in children with IBD and their parents were performed in Canada, Australia and France. However, the results of these studies cannot be simply projected to Poland due to the differences in lifestyle, diet and healthcare model. The importance of such factors for understanding and knowledge about disease in Polish patients with IBD requires a separate study.

Research objectives

Our present study aimed to assess disease-related knowledge in children with IBD and their parents.

Research methods

A questionnaire-based survey was carried out in 269 children with IBD and 298 parents. The determinants of patients’ and parents’ IBD-KID scores were assessed with hierarchical linear regression models.

Research results

We found that both patients with IBD and their parents had insufficient IBD-related knowledge. Patients’ IBD-KID scores were higher among older than younger patients, among girls compared to boys, among patients who more highly assessed their knowledge about the disease and whose parents did the same. Furthermore, higher scores were found among patients whose parents indicated the Internet as a main source of information, reported membership in the patient Crohn's and Ulcerative Colitis Association J-elita and noted nutritional, surgical immunosuppressive or biological treatment. The patient’s score was also positively associated with the parent’s score.

Research conclusions

This study identified gaps in the disease-related knowledge of Polish children with IBD and their parents. Increased awareness of the disease and knowledge about treatment can have a positive effect on compliance with therapeutic recommendations.

Research perspectives

Further studies on disease-related knowledge among patients with IBD in countries undergoing economic transformation are needed. IBD-KID may be a good tool to assess transition of adolescents with IBD from pediatric to adult care. It could be also used in assessment of any intervention aimed to increase the level of patients’ self-care.