Sloan Melanie, Harwood Rupert, Sutton Stephen, D'Cruz David, Howard Paul, Wincup Chris, Brimicombe James, Gordon Caroline
Behavioural Science Group, Institute of Public Health, University of Cambridge, Cambridge.
Patient and Public Involvement in lupus Research Group, Institute of Public Health, University of Cambridge, Cambridge.
Rheumatol Adv Pract. 2020 Feb 26;4(1):rkaa006. doi: 10.1093/rap/rkaa006. eCollection 2020.
The aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs.
Following a review of LUPUS UK's online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data.
There were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships.
Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
旨在探究患者对自身症状、诊断延迟、误诊及医疗支持的体验和看法，以识别常见体验、偏好及未满足的需求。
在对英国狼疮协会在线论坛进行审查之后，于2018年12月在网上发布了一份调查问卷。这是一项探索性混合方法研究，定性数据进行主题分析，并与描述性和经统计分析的定量数据相结合。
有233名符合条件的受访者。从首次出现症状到确诊的平均时间为6年11个月。76%的受访者报告称，其随后被归因于系统性自身免疫性风湿病的症状至少被误诊过一次。心理健康/非器质性误诊占报告误诊的47%，并表明这降低了对医生的信任，并改变了未来寻求医疗保健的行为。对医生知识和倾听技巧的认知与患者的信任评分高度相关。症状负担很重。疲劳对日常生活活动的影响最大，但大多数受访者表示在应对疲劳方面没有得到支持或支持不足。强烈认为全面且富有同理心的评估和治疗患者可提高诊断准确性并改善医患关系。
患者的反馈表明，如果医生对狼疮/相关系统性自身免疫性疾病有更多了解，并且更愿意倾听和相信患者关于其症状的报告，那么可以促进及时诊断。患者的首要任务包括医生对他们进行全面评估，给予更多情感支持并协助改善生活质量，尤其是在应对疲劳方面。
