新冠后持续症状：114 例“长新冠”患者的定性研究和服务质量原则草案。
Persistent symptoms after Covid-19: qualitative study of 114 "long Covid" patients and draft quality principles for services.
机构信息
Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, OX2 6GG, UK.
Central and North West London NHS Foundation Trust, London, UK.
出版信息
BMC Health Serv Res. 2020 Dec 20;20(1):1144. doi: 10.1186/s12913-020-06001-y.
BACKGROUND
Approximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks. Patients call this "long Covid". We sought to document such patients' lived experience, including accessing and receiving healthcare and ideas for improving services.
METHODS
We held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their stories and comment on others' stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, clinical relationships, access, and service redesign.
RESULTS
Of 114 participants aged 27-73 years, 80 were female. Eighty-four were White British, 13 Asian, 8 White Other, 5 Black, and 4 mixed ethnicity. Thirty-two were doctors and 19 other health professionals. Thirty-one had attended hospital, of whom 8 had been admitted. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others felt "fobbed off"); and possible critical events (e.g. deterioration after being unable to access services). Emotionally significant aspects of participants' experiences informed ideas for improving services.
CONCLUSION
Suggested quality principles for a long Covid service include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.
TRIAL REGISTRATION
NCT04435041.
背景
约 10%的新冠患者出现 3-4 周以上的症状。患者将此称为“长新冠”。我们旨在记录此类患者的生活体验，包括获取和接受医疗保健的情况，以及改善服务的相关想法。
方法
我们对来自英国新冠长期患者支持团体、社交媒体和滚雪球招募的 55 名个体进行了访谈和 8 次焦点小组（n=59）。由于一些焦点小组的参与者已经自行组织成在线社区，我们邀请了一些卫生专业人员参加。参与者被邀请讲述自己的故事，并对他人的故事发表评论。数据使用 NVIVO 软件进行录音、转录、匿名和编码。分析纳入了社会学关于疾病、治疗、同伴支持、临床关系、获取和服务重新设计的理论。
结果
114 名参与者年龄为 27-73 岁，其中 80 名女性。84 名参与者为白种英国人，13 名参与者为亚洲人，8 名参与者为白种其他人种，5 名参与者为黑人，4 名参与者为混血人种。32 名参与者为医生，19 名参与者为其他卫生专业人员。31 名参与者曾去过医院，其中 8 名参与者住院。分析揭示了一种令人困惑的疾病，具有许多、多样且常常反复发作的症状，预后不确定；参与者感到沉重的失落和耻辱感；难以获取和利用服务；难以被认真对待和获得诊断；护理分散和隔离（包括无法获得专科服务）；标准差异（例如，对患者的观察、调查和转诊标准不一致）；治疗关系的质量变化（一些参与者感到得到了很好的支持，而另一些参与者则感到“敷衍了事”）；以及可能的关键事件（例如，无法获取服务后病情恶化）。参与者经历中情感上重要的方面为改善服务提供了思路。
结论
为长新冠服务提出的质量原则包括确保获得医疗服务、减轻疾病负担、承担临床责任和提供连续性护理、多学科康复、基于证据的调查和管理，以及进一步发展知识库和临床服务。
试验注册
NCT04435041。
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