Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany.

BACKGROUND: Paediatric inflammatory bowel disease (PIBD) 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 PIBD 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 a 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 support (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.

Effects of Closure of the Paediatric Department of a District Hospital on Regional Care: Analysis of Patient Flows. / Auswirkungen der Schließung der pädiatrischen Abteilung eines Kreiskrankenhauses auf die regionale Versorgung ­ Analyse der Patientenflüsse.

BACKGROUND: The consequences of economization and staff shortage in the German health care system strongly affect paediatric care structures, especially in rural regions. It is not known how closures of paediatric departments influence patient flows of surrounding hospitals. Here, we investigate the quantitative effects of closure of the paediatric department of a district hospital and the subsequent opening of an alternative inpatient service on the utilisation of inpatient and outpatient care services of the two neighboring hospitals and the emergency services of the region. METHODOLOGY: In the observation period from 2015 to 2019, patient-related data from the three hospitals in the study region as well as data from the rescue service were evaluated. RESULTS: In the year after the paediatric department of the district hospital was closed in 2016, the total number of inpatient cases in the region decreased by 33% (2015: n=1,787; 2016: n=1,193) and then decreased by an additional 11% (2019: n=1,005). The number of outpatient cases decreased by further 8% (2015: n=6,250; 2019: n=5,770). In the last observation year, emergency services were used much more frequently than in the year before the closure (2015: n=398; 2019: n=572). This means an increase of 44%. CONCLUSION: After the closure of the paediatric department, the total number of inpatient cases in the region fell sharply. However, actual gaps in care apparently did not arise. Before closing, the consequences for the surrounding hospitals should be assessed more precisely. Real gaps in care must be counteracted, e. g. through alternative outpatient services.

Diagnostic delay in children with inflammatory bowel disease in the German-Austrian patient registry CEDATA-GPGE 2014-2018.

The incidence and prevalence of pediatric-onset inflammatory bowel disease (PIBD) are on the rise worldwide. Initial symptoms are often recognized with a delay, which reduces the quality of life and may lead to an increased rate of complications. The aim of this study was to determine the diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data from the German-Austrian patient registry CEDATA-GPGE for children and adolescents with PIBD were analyzed for the period January 2014 to December 2018. There were 456 children identified in the data, thereof 258 children (57%) with Crohn's disease (CD) and 198 children (43%) with Ulcerative colitis (UC). The median age was 13.3 years (interquartile range (IQR) = 10.9-15.0), and 44% were females. The median diagnostic delay was 4.1 months (IQR = 2.1-7.0) in CD and 2.4 months (IQR = 1.2-5.1) in UC (p = 0.01). UC was associated with earlier diagnosis than CD (p < 0.001). Only a few factors influencing the diagnostic delay have been verified, e.g., abdominal pain at night and if video capsule endoscopy was performed. Diagnostic delay improved over the years in participating centers, but the level of awareness needs to be high even in common symptoms like abdominal pain.