Welte Tobias, Dinkel Julien, Maurer Florian, Richter Elvira, Rohde Gernot, Schwarz Carsten, Taube Christian, Diel Roland
Klinik für Pneumologie, 1. Medizinische Hochschule Hannover, Hannover, Germany.
Radiologie, 2. Asklepios Fachkliniken München-Gauting, München, Germany.
Pneumologie. 2022 Aug;76(8):534-546. doi: 10.1055/a-1855-0858. Epub 2022 Jul 25.
Management of patients with lung disease caused by non-tuberculous mycobacteria (NTM-LD) in Germany is currently characterized by delayed diagnosis, frequently poor prognosis and high follow-up costs. Mainly due to an increased number of hospitalizations, the SHI-relevant direct costs (€ 9,093.20 patient/year) are higher compared to typical underlying diseases (e.g. asthma: € 706.00 patient/year). This less than optimal NTM care is mainly caused by lack of awareness of the disease at primary care and out-patient specialist care level, largely absent structured referral structures and limited communication between specialists out of hospital with specialized NTM clinics. Lack of incentives to support these communication pathways is part of the problem. Sufficient, appropriate and economically sustainable care is hampered by poor adherence to treatment recommendations.
For the development of the NTM care concept, relevant professional societies and patient organizations were interviewed about the care situation. Thereafter, 20 NTM-LD patients, 5 residential pulmonologists and 8 experts were interviewed in an explorative qualitative interview to determine the current patient pathway. Based on the findings, the NTM care concept was developed in an advisory board by the authors.
Regional management centers should concentrate specific expertise and ensure quality of care through routine consultation and involvement in diagnosis, decision-making on treatment necessity, initiation of therapy, follow-up examinations, and determination of the therapy success, as well as adequate follow-up of patients. The referring pulmonologist should continue to provide case-specific therapy support close to the patient's home in preferred shared-care concept. The establishment of clear referral structures and case identification criteria will help residential physicians to include patients at risk in the NTM-care system early. Patients and pulmonologists without specific expertise need to be made aware of the care pathway and severity of NTM-LD.
The increased morbidity and mortality of NTM-LD patients must be addressed with patient-oriented, interdisciplinary and trans-sectoral care concept. An NTM care system with clear treatment procedures and referral structures is proposed for a nationwide pilot project.
德国非结核分枝杆菌所致肺病（NTM-LD）患者的管理目前存在诊断延迟、预后往往较差以及随访成本高的特点。主要由于住院次数增加，与法定医疗保险相关的直接成本（每年每位患者9093.20欧元）高于典型的基础疾病（如哮喘：每年每位患者706.00欧元）。这种不太理想的NTM护理主要是由于基层医疗和门诊专科护理层面缺乏对该疾病的认识、基本没有结构化的转诊结构以及医院外专科医生与NTM专科诊所之间沟通有限。缺乏支持这些沟通途径的激励措施也是问题的一部分。对治疗建议的依从性差阻碍了充分、适当且经济上可持续的护理。
为了制定NTM护理概念，就护理情况对相关专业协会和患者组织进行了访谈。此后，对20名NTM-LD患者、5名住院肺科医生和8名专家进行了探索性定性访谈，以确定当前的患者就医途径。基于这些发现，作者在一个咨询委员会中制定了NTM护理概念。
区域管理中心应集中特定专业知识，并通过常规咨询以及参与诊断、治疗必要性决策、治疗启动、随访检查、治疗效果判定以及对患者进行充分随访来确保护理质量。转诊肺科医生应继续在首选的共同护理概念下，在患者家附近提供针对具体病例的治疗支持。建立明确的转诊结构和病例识别标准将有助于住院医生尽早将有风险的患者纳入NTM护理系统。需要让没有特定专业知识的患者和肺科医生了解NTM-LD的护理途径和严重程度。
必须通过以患者为导向、跨学科和跨部门的护理概念来应对NTM-LD患者发病率和死亡率上升的问题。为一个全国性试点项目提出了一个具有明确治疗程序和转诊结构的NTM护理系统。
