Making the Invisible Visible: The Hidden Cost of Paediatric Inflammatory Bowel Disease

Turner, Dan

doi:10.33590/emjgastroenterol/10312720

Cited by 2 publications

(2 citation statements)

References 18 publications

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“…The hidden and invisible costs that the existing care structure imposes on patients and their families are growing. These are the reduced productivity of the patient and the family, as well as the lost time with the family due to the effort to be able to perceive the appropriate care [20]. This aspect is also reflected in the high percentage of patients' parents who report fear of losing their jobs [21] or fear for their marriage and family.…”

Section: Discussionmentioning

confidence: 99%

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

Kaul,

Schumann,

Sander

et al. 2023

Children

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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.

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Section: Discussionmentioning

confidence: 99%

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

Kaul,

Schumann,

Sander

et al. 2023

Children

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“…The majority of cases are diagnosed in young people, and their prevalence is constantly increasing. Therefore, the impact of IBD on healthcare systems is increasing exponentially [1][2][3]. The incidence of IBD in pediatriconset IBD is also increasing, particularly in developing countries.…”

Section: Introductionmentioning

confidence: 99%

Costs of Healthcare for Children with Inflammatory Bowel Diseases (IBD) in Poland

2023

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The last two decades have seen an increase in the incidence of inflammatory bowel disease (IBD) in many regions of the world, which has had a significant impact on both the social and economic burden of governments and healthcare systems. The aim of this study was to determine the level of hospitalization and outpatient treatment costs for children and adolescents with Crohn’s disease and ulcerative colitis, depending on age, location, and activity of the disease. Methods were a retrospective analysis of the medical documentation of 240 children with IBD, hospitalized in the Gastroenterology Ward, Department of Pediatrics Medical University of Silesia (Katowice, Poland), along the three years follow up. The costs of treatment consisted of calculations of the supply of oral and intravenous drugs, calculations of the costs of laboratory tests, imaging, and consultations, as well as person-day costs. The most important results, determined with high costs of IBD treatment, are associated with younger age, high disease activity, localization in the small intestine in Crohn’s disease (CD), and inflammatory changes in the entire colon in Ulcerative Colitis (UC). During the observation, it was noticed that the shortening of the hospitalization time did not significantly affect the total costs, which remained at a stable level.

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Making the Invisible Visible: The Hidden Cost of Paediatric Inflammatory Bowel Disease

Cited by 2 publications

References 18 publications

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

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

Costs of Healthcare for Children with Inflammatory Bowel Diseases (IBD) in Poland

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