Factors influencing early referral, early diagnosis and management in patients with diffuse cutaneous systemic sclerosis.
Factors influencing early referral, early diagnosis and management in patients with diffuse cutaneous systemic sclerosis.
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DOI：
10.1093/rheumatology/kex504
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发表时间：
2018-05-01
期刊：
影响因子：
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通讯作者：
Khanna D
中科院分区：
文献类型：
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作者：
Distler O;Allanore Y;Denton CP;Matucci-Cerinic M;Pope JE;Hinzmann B;Davies S;de Oliveira Pena J;Khanna D
了解欧美dcSSc患者转诊、早期诊断及其他管理方面的临床实践。对来自不同国家(英国、法国、德国、意大利、西班牙和美国)的84名风湿科医生(或内科医生)和40名皮肤科医生进行了半结构化采访。医生被要求确定患者路径中与患者陈述、诊断和转诊有关的关键步骤，以及其他治疗和后续过程。受访的医生报告说，dcSSc表现迟缓是很常见的，一些患者在症状持续长达1年后向初级保健医生提出。据报道，初级保健医生对dcSSc的认识差异很大。最终诊断通常遵循基于指南的建议，大多数情况下由风湿科医生(或法国的内科医生)进行，他们仍然负责全球患者管理，较少参与皮肤科医生的诊断和管理。专科中心没有明确界定，也不是在所有国家都存在。患者和初级保健提供者可能不知道dcSSc的症状，因此提交和转诊到专家护理往往很晚。因此，提高患者和初级保健医生的认识是必要的，以促进更早的转诊和诊断。一旦被推荐，在诊断和随访时更一致地使用改良的Rodnan皮肤评分可能有助于监测疾病的进展。此外，建立专科中心可能有助于促进这种变化和改善患者护理。
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.
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影响因子：
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作者：
van den Hoogen, Frank;Khanna, Dinesh;Fransen, Jaap;Johnson, Sindhu R.;Baron, Murray;Tyndall, Alan;Matucci-Cerinic, Marco;Naden, Raymond P.;Medsger, Thomas A., Jr.;Carreira, Patricia E.;Riemekasten, Gabriela;Clements, Philip J.;Denton, Christopher P.;Distler, Oliver;Allanore, Yannick;Furst, Daniel E.;Gabrielli, Armando;Mayes, Maureen D.;van Laar, Jacob M.;Seibold, James R.;Czirjak, Laszlo;Steen, Virginia D.;Inanc, Murat;Kowal-Bielecka, Otylia;Mueller-Ladner, Ulf;Valentini, Gabriele;Veale, Douglas J.;Vonk, Madelon C.;Walker, Ulrich A.;Chung, Lorinda;Collier, David H.;Csuka, Mary Ellen;Fessler, Barri J.;Guiducci, Serena;Herrick, Ariane;Hsu, Vivien M.;Jimenez, Sergio;Kahaleh, Bashar;Merkel, Peter A.;Sierakowski, Stanislav;Silver, Richard M.;Simms, Robert W.;Varga, John;Pope, Janet E.
通讯作者：
Pope, Janet E.
影响因子：
--
作者：
Shand, Lynne;Lunt, Mark;Denton, Christopher P.
通讯作者：
Denton, Christopher P.
影响因子：
27.4
作者：
Dobrota, Rucsandra;Maurer, Britta;Distler, Oliver
通讯作者：
Distler, Oliver
影响因子：
3.9
作者：
Su, Robert;Bennett, Mihoko;Chung, Lorinda
通讯作者：
Chung, Lorinda
影响因子：
--
作者：
CLEMENTS, PJ;LACHENBRUCH, PA;FURST, DE
通讯作者：
FURST, DE