Kjellström Barbro, Ryftenius Henrik, Landenfelt-Gestre Lise-Lotte, Ivarsson Bodil
Lund University, Dept of Clinical Sciences Lund, Clinical Physiology and Skåne University Hospital, Lund, Sweden.
Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
Pulm Circ. 2020 Oct 26;10(4):2045894019897499. doi: 10.1177/2045894019897499. eCollection 2020 Oct-Dec.
Pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension are rare conditions that require complex interventions by multidisciplinary teams. The European Society of Cardiology (ESC)/the European Respiratory Society (ERS) 2015 guidelines included recommendations for pulmonary hypertension (PH) referral centers including minimum number of patients, staff, facilities, and network. The aim of the present study was to investigate how the PH-specialist centers in the Nordic countries are presently organized. A descriptive, questionnaire was sent to all PH-specialist centers in the Nordic countries in 2018. Sixteen of 20 PH-specialist centers completed the questionnaire. Seven centers (43%) followed less than 50 patients and three centers (19%) followed 125 patients or more. All had a physician or nurse attending or available at the clinic and eight had support staff such as physiotherapists, counsellors, dieticians, or psychologists directly connected to the center. Twelve centers were available by telephone five days or more per week. Nine centers offered a nurse-led outpatient clinic and of those, six had nurses delegated to make protocol-led changes in pulmonary arterial hypertension-specific treatment. Half of the centers had cooperation with a patient organization. All centers except one used international guidelines to guide care and treatment. More than half of the Nordic PH-specialist centers adhered to the ESC/ERS 2015 guidelines recommendations for volumes and staff in 2018, but there is potential for improvement. However, when formulating recommendations of patient volumes in guidelines, the situation for the geographical large but sparsely populated Nordic countries needs to be considered.
肺动脉高压和慢性血栓栓塞性肺动脉高压是罕见疾病，需要多学科团队进行复杂干预。欧洲心脏病学会（ESC）/欧洲呼吸学会（ERS）2015年指南纳入了关于肺动脉高压（PH）转诊中心的建议，包括患者的最少数量、工作人员、设施和网络。本研究的目的是调查北欧国家的PH专科中心目前的组织情况。2018年向北欧国家所有PH专科中心发送了一份描述性问卷。20个PH专科中心中有16个完成了问卷。7个中心（43%）随访的患者少于50例，3个中心（19%）随访125例或更多患者。所有中心在诊所都有医生或护士值班或随叫随到，8个中心有诸如物理治疗师、顾问、营养师或心理学家等支持人员直接与中心相关联。12个中心每周有5天或更多时间可通过电话联系。9个中心提供由护士主导的门诊诊所，其中6个中心有被授权对肺动脉高压特异性治疗进行方案主导性调整的护士。一半的中心与患者组织有合作。除一个中心外，所有中心都采用国际指南来指导护理和治疗。2018年，超过一半的北欧PH专科中心遵守了ESC/ERS 2015年指南关于患者数量和工作人员的建议，但仍有改进空间。然而，在制定指南中患者数量的建议时，需要考虑地域广阔但人口稀少的北欧国家的情况。
