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Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States.
BMC Rheumatology Pub Date : 2020-01-10 , DOI: 10.1186/s41927-019-0102-7
Alexis Ogdie 1, 2 , W Benjamin Nowell 3 , Eddie Applegate 3 , Kelly Gavigan 3 , Shilpa Venkatachalam 3 , Marie de la Cruz 4 , Emuella Flood 4 , Ethan J Schwartz 4 , Beverly Romero 4 , Peter Hur 5
Affiliation  

Background There are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim to describe patient experiences related to receiving a PsA diagnosis. Methods Ours was a mixed-method, 2-phase study. Phase 1 comprised concept elicitation and cognitive interviews with clinical experts and adults diagnosed with PsA to develop a cross sectional, web-based survey. US adults with a self-reported PsA diagnosis were recruited through a patient support community (CreakyJoints), an online patient research registry (ArthritisPower), and social media outreach. In Phase 2, the online survey collected data on sociodemographics, clinical symptoms, disease burden, and diagnosis history of survey respondents with PsA. Results Of the 203 respondents included, 172 (84.7%) were female, and the mean (SD) age was 51.6 (10.8) years. The time between seeking medical attention and receiving a diagnosis was < 6 months for 69 respondents, 6 months to 4 years for 68 respondents, and ≥ 5 years for 66 respondents. Most respondents sought care from general practitioners (79.8%) and rheumatologists (66.5%). Common initial symptoms that led respondents to seek medical attention were joint pain (70.0%) and stiffness (53.7%). Among the initial symptoms that led respondents to seek care, joint pain, swollen joints, and sausage-like fingers or toes (indicating dactylitis) were more common among respondents with shorter time to diagnosis, whereas stiffness, fatigue, enthesitis (indicated by foot problems, tendon and ligament pain), and back pain were more common among respondents with longer time to diagnosis. Common misdiagnoses were psychosomatic issues (26.6%) and osteoarthritis (21.7%). Respondents with shorter times to diagnosis had lower frequencies of misdiagnosis. Conclusions Respondents with PsA reported delays in diagnosis and misdiagnoses on their journey to a PsA diagnosis. Symptom differences, such as enthesitis and stiffness, were noted among respondents with shorter vs longer time to diagnosis. Increased understanding of diagnostic barriers may lead to earlier diagnosis and appropriate management to improve outcomes.

中文翻译:

患者对银屑病关节炎诊断途径的看法:对美国患者进行网络调查的结果。

背景 关于银屑病关节炎(PsA)患者的诊断经验的真实世界数据有限,包括寻求的医疗护理和诊断的潜在障碍。我们的目的是描述与接受银屑病关节炎诊断相关的患者经历。方法 我们的研究是一项混合方法、两阶段的研究。第一阶段包括概念启发和对临床专家和诊断患有银屑病关节炎的成年人进行认知访谈,以开展横断面、基于网络的调查。通过患者支持社区 (CreakyJoints)、在线患者研究登记处 (ArthritisPower) 和社交媒体外展招募自我报告患有银屑病关节炎 (PsA) 诊断的美国成年人。在第二阶段,在线调查收集了银屑病关节炎患者的社会人口统计数据、临床症状、疾病负担和诊断史数据。结果 203 名受访者中,172 名(84.7%)为女性,平均(SD)年龄为 51.6(10.8)岁。69 名受访者寻求医疗救助和获得诊断之间的时间< 6 个月,68 名受访者为 6 个月至 4 年,66 名受访者≥ 5 年。大多数受访者向全科医生(79.8%)和风湿科医生(66.5%)寻求治疗。导致受访者就医的常见初始症状是关节疼痛(70.0%)和僵硬(53.7%)。在导致受访者寻求护理的最初症状中,关节疼痛、关节肿胀和香肠状手指或脚趾(表明指趾炎)在诊断时间较短的受访者中更为常见,而僵硬、疲劳、附着点炎(表明足部问题) 、肌腱和韧带疼痛)和背痛在诊断时间较长的受访者中更为常见。常见的误诊是心身问题(26.6%)和骨关节炎(21.7%)。诊断时间较短的受访者误诊率较低。结论 患有 PsA 的受访者报告了在 PsA 诊断过程中诊断延迟和误诊的情况。在诊断时间较短和较长的受访者中发现了症状差异,例如附着点炎和僵硬。增加对诊断障碍的了解可能会导致早期诊断和适当的管理以改善结果。
更新日期:2020-04-22
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