Litzkendorf Svenja, Eidt-Koch Daniela, Zeidler Jan, Graf von der Schulenburg Johann-Matthias
Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Str. 7, 30159, Hannover, Deutschland.
Fakultät Gesundheitswesen, Ostfalia Hochschule für angewandte Wissenschaften, Wolfsburg, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2022 Sep;65(9):872-880. doi: 10.1007/s00103-022-03562-7. Epub 2022 Jul 21.
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.
To investigate current forms of care provision and reimbursement of centres for rare diseases and to develop future approaches for sustainable compensation.
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.
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.
为确保对罕见病患者的专科护理，在过去几年中资助了众多罕见病中心。然而，医院门诊护理的报销具有多种护理和支付形式。从对个别罕见病的研究来看，有证据表明罕见病患者护理报销存在不足。
调查罕见病中心当前的护理提供和报销形式，并制定未来可持续补偿的方法。
首先，要求德国的罕见病中心使用问卷提供有关其护理和报销形式的信息。随后，对来自罕见病中心、健康保险、卫生政策和患者的代表进行了两次焦点小组访谈和一次专家访谈，以讨论当前和未来精英化的护理提供和报销形式。使用内容分析法对数据进行评估。
39个罕见病中心参与了问卷调查。其中，38%的中心获得大学门诊部门的统一费用/津贴，其金额差异显著，41%的中心获得包括大学门诊部门津贴和其他报销形式的混合支付。访谈中提到了罕见病中心成本回收不足及其对患者护理的影响。在这种情况下，已确定需要进一步发展护理提供和报销形式。参与者倾向于为罕见病设立特殊的统一费用/津贴，以涵盖对罕见病患者耗时的护理。
