title: [Analysis of costs and profits of ambulatory care of Marfan patients after initiation of a novel German legal directive (116 b SGB V)].
abstract: BACKGROUND
  The Marfan syndrome is a typical rare disease with multiorgan involvement and the need for specialized interdisciplinary medical care. A novel German legal directive according to section sign 116 b of the Social Statutes Book V (116 b SGB V) improves options for reimbursement and thus encourages specialized hospitals to provide ambulatory care for rare diseases such as Marfan syndrome. The authors provide the first economic analysis of section sign 116 b in a German Marfan center.
  
  
  METHODS
  The costs were assessed in 184 cases with Marfan syndrome receiving medical care in the Hamburg Marfan Clinic. The authors assessed the financial profit both according to payments received from invoices established according to the 116 b directive [reimbursement (116b)] and from calculations according to section sign 117 SGB V [reimbursement (117)].
  
  
  RESULTS
  A total of 117 patients traveled to the Marfan clinic (64%) < 50 km, 27 patients (15%) between >or= 50 and <or= 100 km, and 40 patients (22%) > 100 km. The total costs for ambulatory care were 71,606.28 Euro. The reimbursement (116b) was 55,549.87 Euro and the reimbursement (117) was 11,776.00 Euro.
  
  
  CONCLUSIONS
  Many patients accept long distances of traveling to receive specialized ambulatory medical care. However, for optimal patient management specialized centers need to cooperate intensively with local health care providers. The novel legal directive according to section sign 116 b has significantly improved reimbursement for Marfan centers and allows for improving the quality of medical care.
authors.affiliation: Universitäres Herzzentrum, Universitätsklinikum Hamburg-Eppendorf, Hamburg-Eppendorf, Germany.
authors.forename: Marie-Luise
authors.initials: ML
authors.lastname: Manow
authors.forename: Nesrin
authors.initials: N
authors.lastname: Paulsen
authors.forename: Meike
authors.initials: M
authors.lastname: Rybczynski
authors.forename: Thomas
authors.initials: T
authors.lastname: Mir
authors.forename: Alexander M J
authors.initials: AM
authors.lastname: Bernhardt
authors.forename: Hendrik
authors.initials: H
authors.lastname: Treede
authors.forename: Gunda
authors.initials: G
authors.lastname: Ohm
authors.forename: Bettina
authors.initials: B
authors.lastname: Fuisting
authors.forename: Uwe
authors.initials: U
authors.lastname: Rehder
authors.forename: Florian
authors.initials: F
authors.lastname: Meier
authors.forename: Marina
authors.initials: M
authors.lastname: Vogler
authors.forename: Thomas
authors.initials: T
authors.lastname: Meinertz
authors.forename: Karin
authors.initials: K
authors.lastname: Overlack
authors.forename: Yskert
authors.initials: Y
authors.lastname: von Kodolitsch
mesh_terms: D000293:Adolescent; D000328:Adult; D000553:Ambulatory Care / Q000191:economics* / Q000331:legislation & jurisprudence*; D002648:Child; D002675:Child, Preschool; D003299:Cooperative Behavior; D003365:Costs and Cost Analysis; D005260:Female; D005858:Germany; D017048:Health Care Costs / Q000331:legislation & jurisprudence*; D005102:Health Expenditures / Q000331:legislation & jurisprudence; D006297:Health Services Accessibility / Q000191:economics / Q000331:legislation & jurisprudence; D006782:Hospitals, Special / Q000191:economics / Q000331:legislation & jurisprudence; D006801:Humans; D007223:Infant; D033183:Interdisciplinary Communication; D008297:Male; D008382:Marfan Syndrome / Q000191:economics* / Q000628:therapy*; D008875:Middle Aged; D009313:National Health Programs / Q000191:economics* / Q000331:legislation & jurisprudence*; D010044:Outpatient Clinics, Hospital / Q000191:economics / Q000331:legislation & jurisprudence; D010348:Patient Care Team / Q000191:economics / Q000331:legislation & jurisprudence; D035583:Rare Diseases; D012017:Referral and Consultation; D012051:Reimbursement Mechanisms / Q000191:economics* / Q000331:legislation & jurisprudence*; D055815:Young Adult
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