Department of Rheumatology, Oslo University Hospital, Oslo, Norway.
Department of Respiratory Disease and Allergy, Centre for Rare Lung Diseases, Aarhus University Hospital, Aarhus, Denmark.
Rheumatology (Oxford). 2021 Dec 1;60(12):5601-5609. doi: 10.1093/rheumatology/keab154.
Interstitial lung disease is frequent in SSc (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients.
Semi-structured qualitative interviews conducted in eight European countries looked at HCP (n = 95) and patient perspectives (n = 47) using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored.
(i) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, and delayed and/or inappropriate referral. (ii) The diagnostic phase is in most countries coordinated by rheumatologists, who are also the main point of care. Depending on the local health system, organization of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (iii) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, and paramedical and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD.
Lack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc-ILD patients.
系统性硬化症（SSc）常伴有间质性肺病（SSc-ILD），显著降低患者的生活质量。本研究旨在分析 SSc-ILD 患者的诊疗流程，并评估患者和医护人员的体验，以明确 SSc-ILD 患者的未满足需求。
在 8 个欧洲国家开展半结构式定性访谈，纳入医护人员（n=95）和患者（n=47），采用 2 套共 70 个研究问题。系统评估患者诊疗流程的诊断前、诊断中和诊断后阶段。
（i）在诊断前阶段，所有参与国家的医护人员和患者均发现存在多个差距：初级保健医生和专科医生对疾病的了解有限，缺乏准确的患者信息，以及转诊延误和/或不恰当。（ii）在诊断阶段，大多数国家均由风湿病学家协调，他们也是主要的治疗点。根据当地的卫生系统，多学科协作的组织形式存在差异。医护人员认为缺乏国家指南，而患者表示难以获得与疾病相关的信息。（iii）在诊断后阶段，医护人员和患者均表示缺乏有效的治疗方法、专门的护士以及辅助医疗和心理支持。患者和照护者还表示需要明确的 SSc-ILD 信息。
疾病特异性知识缺乏、国家卫生系统存在差距以及患者和照护者的信息和支持不足，这些均是未满足的需求，可能导致 SSc-ILD 患者的诊疗延误，需要采取措施以改善患者的管理和生活质量。
