Affiliation:
1. University Medicine Greifswald
2. Justus-Liebig-University
Abstract
Abstract
Background
Paediatric inflammatory bowel disease (IBD) patients require chronic care over the lifespan. Care for these patients is complex, as it is adapted for childrens’ life stages and changing disease activity. Guideline based care for this patient group recommends a multidisciplinary approach, which includes in addition to paediatric gastroenterologists nutritional and psychological care services. For PPIBD patients, a discrepancy between available guideline-based multidisciplinary care and actual care has been found from the provider side, but to what extent patients experience this is unclear.
Objectives
To identify which healthcare services were used and whether socio-demographic, geographic or disease related factors have an influence on health service utilisation.
Methods
A standardised questionnaire (CEDNA) was distributed amongst parents of children aged 0-17 diagnosed with PIBD and adolescents (aged 12-17) with an PIBD. Items related to health service use were analysed, these included specialist care, additional care services, reachability of services and satisfaction with care. Logistic regression models on additional service use were calculated. Service availability and reachability maps were made.
Results
Data was analysed for 583 parent and 359 adolescent questionnaires. Over half of the respondents had Crohn’s Disease (CD, patients n=186 parents n=297). Most patients and parents reported their paediatric gastroenterologist as their main care contact (patients 90.5%; parents 93%). Frequently reported additional services were nutritional counselling (patients 48.6%; parents 42.2%) and psychological counselling (patients 28.1%; parents 25.1%). Nutritional counselling was more frequently reported by CD patients in both the patient (OR 2.86; 95%CI 1.73-4.70) and parent (OR 3.1; 95%CI 1.42-6.71) sample. Of the patients, 32% reported not using any additional services, which was more likely for patients with an illness duration of less than one year (OR 3.42; 95%CI 1.26-9.24). This was also observed for the parent population (OR 2.23; 95%CI 1.13-4.4).
The population-based density of specialised paediatric gastroenterologists was not proportionate to the spatial distribution of patients in Germany, which may have an influence on access.
Conclusions
Parents and children reported highly specialised medical care. Multidisciplinary care offers do not reach the entire patient population. Access to multidisciplinary services needs to be ensured for all affected children.
Publisher
Research Square Platform LLC
Reference41 articles.
1. World Health Organization. International statistical classification of diseases and related health problems. 10th ed. Geneva: World Health Organization; 2010.
2. Hoffmann JC, Klump B, Kroesen A, Siegmund B. Chronisch-entzündliche Darmerkrankungen: In Klinik und Praxis / Jörg C. Hoffmann, Bodo Klump, Anton Kroesen, Britta Siegmund. Berlin, Heidelberg: Springer; 2020.
3. Long-term outcomes of pediatric inflammatory bowel disease;Nasiri S;Semin Pediatr Surg,2017
4. Chronisch entzündliche Darmerkrankungen – die biopsychosoziale Realität im Kindes- und Jugendalter. [Inflammatory bowel diseases-the biopsychosocial reality in childhood and adolescence];Krohn K;Bundesgesundheitsbl,2020
5. Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease;Ruemmele FM;J Crohns Colitis,2014