Nachhaltige Vergütung der B‑Zentren für Seltene Erkrankungen in Deutschland

Status quo und Lösungsansätze

authored by

Svenja Litzkendorf, Daniela Eidt-Koch, Jan Zeidler, Johann Matthias Graf von der Schulenburg

Abstract

Background: To ensure specialized care of patients with rare diseases, numerous centres for rare diseases were funded over the past few years. The reimbursement of patients’ ambulatory care in hospitals, however, is characterized by a plurality of forms of care and payment. There is some evidence of deficits in the reimbursement of care of patients suffering from a rare disease from studies on individual rare diseases. Objectives: To investigate current forms of care provision and reimbursement of centres for rare diseases and to develop future approaches for sustainable compensation. Materials and methods: Initially, centres for rare diseases in Germany were asked to provide information about their forms of care and reimbursement using questionnaires. Subsequently, two focus group interviews and one expert interview with representatives from centres for rare diseases, health insurance, health politics and patients were conducted to discuss current and future meritocratic forms of care provision and reimbursement. The data were evaluated using content analysis. Results and conclusions: Thirty-nine centres for rare diseases participated in the questionnaire survey. Of those, 38% receive a flat fee/allowance for university outpatient departments, the amount of which varies notably, and 41% obtain a mixed payment comprising an allowance for university outpatient departments and other forms of reimbursement. An under-recovery of costs in centres for rare diseases and its impact on patient care were mentioned in the interviews. In this context, a need to further develop forms of care provision and reimbursement has been identified. Participants prefer a special flat fee/allowance for rare diseases that covers the time-consuming care for patients with rare diseases.

Organisation(s)

Institute of Health Economics
Institute of Insurance Business Administration

External Organisation(s)

Ostfalia University of Applied Sciences

Type

Article

Journal

Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz

Volume

65

Pages

872-880

No. of pages

9

ISSN

1436-9990

Publication date

09.2022

Publication status

Published

Peer reviewed

Yes

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.1007/s00103-022-03562-7 (Access: Open)