Department of Rheumatology, University Hospital Zurich, Zurich, Switzerland.
Immunogenetics, Cochin Institute, Paris, France.
Rheumatology (Oxford). 2018 May 1;57(5):813-817. doi: 10.1093/rheumatology/kex504.
To gain insight into clinical practice regarding referral, early diagnosis and other aspects of the management of patients with dcSSc in Europe and the USA.
Semi-structured interviews were conducted with 84 rheumatologists (or internal medicine physicians) and 40 dermatologists in different countries (the UK, France, Germany, Italy, Spain and the USA). Physicians were asked to identify key steps in the patient pathway relating to patient presentation, diagnosis and referral, in addition to other treatment and follow-up processes.
The interviewed physicians reported that late presentation with dcSSc was common, with some patients presenting to primary care physicians after symptoms had persisted for up to 1 year. Awareness of dcSSc is reported to vary widely among primary care physicians. Final diagnosis, generally following guideline-based recommendations, was by rheumatologists in most cases (or internal medicine physicians in France) and they remained responsible for global patient management, with lesser involvement in diagnosis and management by dermatologists. Specialist centres were not well defined and did not exist in all countries.
Patients and primary healthcare providers can be unaware of the symptoms of dcSSc, therefore presentation and referral to specialist care are often late. Thus, improved awareness among patients and primary care physicians is necessary to facilitate earlier referral and diagnosis. Once referred, more consistent use of the modified Rodnan skin score at diagnosis and follow-up may help to monitor disease progression. Furthermore, establishing specialist centres may help to promote such changes and improve patient care.
深入了解欧洲和美国在硬皮病患者转诊、早期诊断及其他方面的管理实践。
对来自不同国家（英国、法国、德国、意大利、西班牙和美国）的 84 名风湿病学家（或内科医生）和 40 名皮肤科医生进行半结构式访谈。要求医生识别患者就诊、诊断和转诊相关的关键步骤，以及其他治疗和随访流程。
受访医生报告称，硬皮病患者就诊时间较晚较为常见，一些患者在症状持续长达 1 年后才到初级保健医生处就诊。初级保健医生对硬皮病的认识差异很大。根据指南推荐的最终诊断通常由风湿病学家（或法国的内科医生）做出，他们负责患者的全面管理，皮肤科医生在诊断和管理方面的参与度较低。专业中心的定义不明确，并非所有国家都设有专业中心。
患者和初级保健提供者可能对硬皮病的症状不了解，因此就诊和转诊至专科治疗往往较晚。因此，需要提高患者和初级保健医生的认识，以促进更早的转诊和诊断。一旦转诊，在诊断和随访时更一致地使用改良 Rodnan 皮肤评分可能有助于监测疾病进展。此外，建立专业中心可能有助于推动这些变化并改善患者的护理。
