gms | German Medical Science

Background and state of research: A quarter of the paediatric population in Germany with IBD is diagnosed before the age of ten (Buderus et al., 2015). Long term outcomes in this population have improved, but require intensive treatment over the lifespan (Nasiri et al., 2017). Treatment is complex, needs to be adapted to changing disease activity phases and age requirements. It takes place in a multidisciplinary specialised setting (Hoffmann et al., 2020). The availability of such settings in Germany is mostly known, but to what extend these are used is unclear (Zernickel et al., 2022). Experiences and needs of paediatric patients and their families should direct service development and be part of the process towards successful guideline-based care.

Aim and research questions: To identify what care services and treatment paths are reported by paediatric IBD patients and parents. Two research questions were answered:

1.

Which care structures and services are reported?

2.

What socio-demographic, geographic or disease related factors can have an influence on the use of care structures and services?

Method: A standardised questionnaire (CEDNA) was distributed amongst parents (with children aged 0-17 diagnosed with IBD) and adolescents (aged 12-17 with an IBD). The questionnaire allowed matching between parent and child answers. Questionnaires were included for analysis if data on age, gender, diagnosis and duration since diagnosis were available.

Results: In total 1158 questionnaires were filled out (450 by adolescents). Data was analysed for 583 parent and for 360 adolescent questionnaires, matching was possible for 240 questionnaires. Over 90% of the respondents indicated having a paediatric gastroenterologist as main treatment contact. Additional services used were dieticians (parents: 42,2%, children 48,6%), psychological services (parents 25%, children 28%), disease specific counselling and information (parents 9.1%, children 10,51%) and physiotherapy (parents 9,7%, children 15,3%). Sporadically reported were services: genetics, family or sexual counselling, transition programs, home nurses and self-help groups. Based on parental report, older girls were more likely to use psychological services (ORgender 1.6, 95% CI [1.09,2.42]; ORage 1.13, 95% CI [1.06, 1.2]). Parents and adolescents reported satisfaction with care (parents 95,34%, children 94%), however, 22% of adolescents in an active disease state reported dissatisfaction with treatment.

Discussion: Paediatric gastroenterologists were reported as the main treatment contact. Additional services were used, but not by all patients. This questionnaire was mainly distributed through specialised centres and thus reflects by-and-large the experiences of patients with a specialised main care provider. Regions that have less specialised centres are likely unable to provide similar holistic care (Leiz et al., 2022).

Implications for care: Multidisciplinary, coordinated treatment approaches are an important requirement for quality of care in paediatric IBD. The current findings showed that not all necessary resources are known and used by parents and children. Multidisciplinary approaches for the treatment of paediatric IBD should be strengthened further.

Funding: Innovationsfonds/Versorgungsforschung; 01VSF17054