Children and adolescents with complex-chronic, neurological diseases
Conditions
Interventions
Group 1: New type of care KoCoN
Group 2: Treatment As Usual
Sponsors
Vestische Kinder- und Jugendklinik, Universität Witten/Herdecke
Eligibility
Sex/Gender
All
Age
No minimum to 17 Years
Inclusion criteria
Inclusion criteria: Planned inpatient admission (at least 3 days in advance) No previous inclusion in ongoing study (control or intervention group) Statutory Health Insurance Complex chronic disease affecting the nervous system Complex chronic symptoms Sufficient understanding of the German language Consent of parents to participate in the study
Exclusion criteria
Exclusion criteria: Withdrawal of consent Death during the in-patient stay
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Overall Facets-of-PPC (FPPC) scale at T2 - a scale to assess the general quality of life of complexly ill children and their families with the subscales Child’s social participation, normalcy, social support, coping with The disease, and caregiver’s competencies. Pelke, S., Wager, J., Claus, B. B., Stening, K., Zernikow, B., & Reuther, M. (2021). Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families—A Multicenter Prospective Longitudinal Study. Children (Basel, Switzerland), 8(10), 905. https://doi.org/10.3390/children8100905 | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes of this study at the patient and family level are symptom burden (symptom scale of Facets-of-PPC, Pelke et al., 2021), quality of inpatient and outpatient care (KoCon-V, Schmidt et al., 2023), global satisfaction with inpatient and outpatient care (ebd.), utilization of services (adapted and translated version of TIC-P, Bouwmans et al., 2013), indirect cost of disease (ebd.), utilization of ePA as well as direct costs of health insurances and care insurance. Furthermore, the implementation of the intervention will be assessed at the level of the centers using qualitative interviews and questionnaires. Bouwmans, C., De Jong, K., Timman, R., Zijlstra-Vlasveld, M., van der Feltz-Cornelis, C., Tan, S. S., & Hakkaart-van Roijen, L. (2013). Feasibility, reliability and validity of a questionnaire on healthcare consumption and productivity loss in patients with a psychiatric disorder (TiC-P). BMC Health Services Research, 13(1). https://doi.org/10.1186/1472-6963-13-217 Pelke, S., Wager, J., Claus, B. B., Stening, K., Zernikow, B., & Reuther, M. (2021). Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families—A Multicenter Prospective Longitudinal Study. Children (Basel, Switzerland), 8(10), 905. https://doi.org/10.3390/children8100905 Schmidt, P., Zernikow, B., Hartenstein-Pinter, A., Bertolini, A., Blankenburg, M., Classen, G., Hagen, M. von der, Hamelmann, E., Raffler, S., Schallner, J., Schimmel, M., Springer, S., Wendel, E., & Rostasy, K. (2023). Psychometrische Eigenschaften des KoCoN-V: Ein Fragebogen zur Versorgungsqualität von Kindern und Jugendlichen mit komplex-chronisch neurologischen Erkrankungen. Submitted to: Monatsschrift Kinderheilkunde. | — |
Countries
Germany
Contacts
Public ContactJulia Wager
PedScience Vestische Forschungs-gGmbH
Outcome results
None listed