Development and evaluation of an IT-based Case Management to improve the care of patients with spinal muscular atrophy

Conditions

G12.0 G12.1

Jana Willems, Isabella Bablok, Erik Farin‐Glattacker, Thorsten Langer

Orphanet Journal of Rare Diseases2023-06-026 citations

10.1186/s13023-023-02739-w

The German pediatric integrated care survey (PICS-D): Translation, adaptation, and psychometric testing

Jana Willems, Isabella Bablok, Matthias Sehlbrede, Erik Farin‐Glattacker, Thorsten Langer

Frontiers in Pediatrics2022-12-234 citations

10.3389/fped.2022.1057256

Evaluation of a Case Management to Support Families With Children Diagnosed With Spinal Muscular Atrophy—Protocol of a Controlled Mixed-Methods Study

Jana Willems, Erik Farin‐Glattacker, Thorsten Langer

Frontiers in Pediatrics2021-08-0310 citations

10.3389/fped.2021.614512

Interventions

Group 1: Intervention group: n=20 families The intervention consists of SMA-specific case management supported by an IT platform. The control group receives care at a muscle center without case manage

Eligibility

Sex/Gender

All

Age

0 Years to 65 Years

Inclusion criteria

Inclusion criteria: Patients with SMA type 1 and heavily affected patients with SMA type 2 with their parents and treating physicians/therapist (sites in Freiburg and Essen only)

Exclusion criteria

Exclusion criteria: Persons who don't meet the inclusion criteria

Design outcomes

Primary

Measure	Time frame
Improvement of care integration and health related quality of life (parent's point of view)	—

Secondary

Measure	Time frame
Improvement of child health situation, parents sick leave and their health care utilisation	—

Countries

Germany

Contacts

Public ContactSabine Wider

Universitätsklinikum Freiburg, Zentrum für Kinder- und Jugendmedizin, Klinik für Neuropädiatrie und Muskelerkrankungen

sabine.wider@uniklinik-freiburg.de076127043440

Outcome results

None listed