Details
| Translated title of the contribution | Sustainable reimbursement of the B‑centres for rare diseases in Germany—status quo and solution approaches |
|---|---|
| Original language | German |
| Pages (from-to) | 872-880 |
| Number of pages | 9 |
| Journal | Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz |
| Volume | 65 |
| Issue number | 9 |
| Early online date | 21 Jul 2022 |
| Publication status | Published - Sept 2022 |
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.
ASJC Scopus subject areas
- Medicine(all)
- Public Health, Environmental and Occupational Health
Sustainable Development Goals
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In: Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, Vol. 65, No. 9, 09.2022, p. 872-880.
Research output: Contribution to journal › Article › Research › peer review
}
TY - JOUR
T1 - Nachhaltige Vergütung der B‑Zentren für Seltene Erkrankungen in Deutschland
T2 - Status quo und Lösungsansätze
AU - Litzkendorf, Svenja
AU - Eidt-Koch, Daniela
AU - Zeidler, Jan
AU - Graf von der Schulenburg, Johann Matthias
N1 - Funding Information: Unser herzlicher Dank gilt allen Zentren für Seltene Erkrankungen (ZSE) und deren Vertreter:innen, die uns bei unserer Studie unterstützt haben. Darüber hinaus danken wir der AG-ZSE für ihre Mitwirkung sowie allen Politik‑, Patienten- und Verbandsvertreter:innen. Diese Studie wurde vom Bundesministerium für Bildung und Forschung (BMBF) gefördert.
PY - 2022/9
Y1 - 2022/9
N2 - 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.
AB - 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.
KW - Ambulatory healthcare
KW - Financing
KW - Flat fee
KW - Focus group interviews
KW - Qualitative content analysis
UR - http://www.scopus.com/inward/record.url?scp=85134575425&partnerID=8YFLogxK
U2 - 10.1007/s00103-022-03562-7
DO - 10.1007/s00103-022-03562-7
M3 - Artikel
C2 - 35864336
AN - SCOPUS:85134575425
VL - 65
SP - 872
EP - 880
JO - Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
JF - Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
SN - 1436-9990
IS - 9
ER -