A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany
Background: The incidence/prevalence of pediatric inflammatory bowel disease (IBD) is increasing. IBD places a significant burden on young patients during important developmental stages and affects their families. Children and adolescents with IBD require increased support from health care services....
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-12-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/10/12/1904 |
| _version_ | 1827575245691682816 |
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| author | Kalina Kaul Stefan Schumann Cornelia Sander Jan Däbritz Jan de Laffolie |
| author_facet | Kalina Kaul Stefan Schumann Cornelia Sander Jan Däbritz Jan de Laffolie |
| author_sort | Kalina Kaul |
| collection | DOAJ |
| description | Background: The incidence/prevalence of pediatric inflammatory bowel disease (IBD) is increasing. IBD places a significant burden on young patients during important developmental stages and affects their families. Children and adolescents with IBD require increased support from health care services. However, little is known about the additional support needed and how to provide it. Therefore, a large survey was conducted with a focus on patient empowerment. Methods: For the anonymous survey, called CEDNA, a patient questionnaire for adolescents with IBD and a questionnaire for parents of children and adolescents with IBD were made available throughout Germany (distributed n = 2810). Questions covered various aspects of coping with the disease, utilization of care, use and need of information and communication services, and how information should be provided. Results: From October 2021 to April 2022, 1158 (n = 708 parents (61.1%), n = 450 patients (38.9%)) questionnaires were completed. The results show a deficit in pediatric IBD care and revealed a large gap in knowledge about core IBD topics (e.g., 74.8% of patients feel poorly informed about transition, 62.4% know little about patient organizations and self-help groups, and 54.7% have little information about preventive health measures), indicating a low level of health literacy among affected children and adolescents. Conclusion: Pediatric IBD poses significant challenges for patients, their families, and healthcare teams. By empowering patients and families, and providing targeted information and communication tailored to the age of the child or adolescent and the needs of the parents, care can be improved and better adapted to the needs of patients. Actions would include providing quality information online through scientific societies and patient organizations and facilitating self-management in adolescents. |
| first_indexed | 2024-03-08T20:53:27Z |
| format | Article |
| id | doaj.art-214b5ca8614a4f2abab197bd5d4ad546 |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-08T20:53:27Z |
| publishDate | 2023-12-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-214b5ca8614a4f2abab197bd5d4ad5462023-12-22T14:00:27ZengMDPI AGChildren2227-90672023-12-011012190410.3390/children10121904A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in GermanyKalina Kaul0Stefan Schumann1Cornelia Sander2Jan Däbritz3Jan de Laffolie4Department of General Pediatrics and Neonatology, University Children’s Hospital, University Giessen, 35392 Giessen, GermanyDepartment of General Pediatrics and Neonatology, University Children’s Hospital, University Giessen, 35392 Giessen, GermanyGerman Crohn’s Disease and Ulcerative Colitis Association (DCCV), National Association for Chronic Inflammatory Diseases of the Digestive Tract, 10179 Berlin, GermanyGreifswald University Medical Center, Department of Pediatrics, 17475 Greifswald, GermanyDepartment of General Pediatrics and Neonatology, University Children’s Hospital, University Giessen, 35392 Giessen, GermanyBackground: The incidence/prevalence of pediatric inflammatory bowel disease (IBD) is increasing. IBD places a significant burden on young patients during important developmental stages and affects their families. Children and adolescents with IBD require increased support from health care services. However, little is known about the additional support needed and how to provide it. Therefore, a large survey was conducted with a focus on patient empowerment. Methods: For the anonymous survey, called CEDNA, a patient questionnaire for adolescents with IBD and a questionnaire for parents of children and adolescents with IBD were made available throughout Germany (distributed n = 2810). Questions covered various aspects of coping with the disease, utilization of care, use and need of information and communication services, and how information should be provided. Results: From October 2021 to April 2022, 1158 (n = 708 parents (61.1%), n = 450 patients (38.9%)) questionnaires were completed. The results show a deficit in pediatric IBD care and revealed a large gap in knowledge about core IBD topics (e.g., 74.8% of patients feel poorly informed about transition, 62.4% know little about patient organizations and self-help groups, and 54.7% have little information about preventive health measures), indicating a low level of health literacy among affected children and adolescents. Conclusion: Pediatric IBD poses significant challenges for patients, their families, and healthcare teams. By empowering patients and families, and providing targeted information and communication tailored to the age of the child or adolescent and the needs of the parents, care can be improved and better adapted to the needs of patients. Actions would include providing quality information online through scientific societies and patient organizations and facilitating self-management in adolescents.https://www.mdpi.com/2227-9067/10/12/1904pediatric inflammatory bowel diseaseCrohn’s diseaseulcerative colitisparentschronically ill childrensurvey |
| spellingShingle | Kalina Kaul Stefan Schumann Cornelia Sander Jan Däbritz Jan de Laffolie A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany Children pediatric inflammatory bowel disease Crohn’s disease ulcerative colitis parents chronically ill children survey |
| title | A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany |
| title_full | A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany |
| title_fullStr | A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany |
| title_full_unstemmed | A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany |
| title_short | A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany |
| title_sort | nationwide survey on patient empowerment in pediatric inflammatory bowel disease in germany |
| topic | pediatric inflammatory bowel disease Crohn’s disease ulcerative colitis parents chronically ill children survey |
| url | https://www.mdpi.com/2227-9067/10/12/1904 |
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