A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany

Abstract

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.

Health Literacy of Children and Adolescents with Inflammatory Bowel Disease (IBD) and Parents of IBD Patients—Coping and Information Needs

“…The CEDNA survey was conducted from October 2021 to April 2022, during which 2810 questionnaires were distributed and 1158 questionnaires were completed (n = 708 parents [61.1%], n = 450 patients [38.9%]). An overview of all socio-demographic data as well as the type and course of the disease of the patients who participated in the CEDNA survey and of the parents who completed the survey for their children was previously published [22]. To understand how long children with IBD, or parents of children with IBD, have been dealing with the disease, an analysis was made with a breakdown of patients by age between 12 and 17 years and by duration since diagnosis of all types of IBD mentioned (Figure 1).…”

“…To determine the level of knowledge on IBD topics, all patients and parents were asked whether they felt sufficiently informed and educated about IBD. They were given the choice of categorizing their response as "completely informed", "mostly informed", "only a little informed", or "not informed at all" (Figure 2) [22].…”

“…To determine the level of knowledge on IBD topics, all patients and parents were asked whether they felt sufficiently informed and educated about IBD. They were given the choice of categorizing their response as "completely informed", "mostly informed", "only a little informed", or "not informed at all" (Figure 2) [22]. Patients and parents were asked about their level of knowledge about IBD topics in general by filling in a scale from fully informed, mostly informed, and little informed to not informed at all.…”

“…The most important topics at diagnosis were IBD in general (parents 67.6%, n = 552), causes (parents 63.2%, n = 535), and nutrition (parents 49.8%, n = 538). The overall data published previously [22] were analyzed in subgroups according to age. In the first year after diagnosis, parents rated school and vocational training (parents 28.2%, n = 528), vaccinations (parents 27.9%, n = 523), and disease documentation (parents 27.2%, n = 492) as relevant topics.…”

“…In this article, we present a detailed subgroup analysis of the results of the first evaluation of the representative IBD Needs Assessment Survey (CEDNA) on the attitudes towards PIBD and the information needs of patients with IBD and parents. An overview of the study and overall results were published in 2023 [22]. The aim of the study was to investigate the self-management skills of adolescents and their families.…”