Purc-Stephenson R J, Blake Keely
Department of Social Science, Augustana Faculty, University of Alberta Augustana Campus, 4901-46 Avenue, Camrose, AB, T4V2R3, Canada.
Koru Family Psychology, Calgary, AB, Canada.
Qual Life Res. 2025 Mar;34(3):823-832. doi: 10.1007/s11136-024-03852-4. Epub 2024 Nov 26.
Inflammatory bowel disease (IBD) is a chronic condition affecting the digestive system with symptoms that are often episodic, unpredictable, socially stigmatizing, and impact quality of life. While a timely diagnosis reduces the risk of complications and improves health outcomes, diagnostic delays (DDs) are common. Our study used narratives and data from patient-reported outcome measures (PROMs) of individuals diagnosed with IBD to examine: (1) What factors helped or hindered achieving a timely diagnosis of IBD? and (2) how do DDs relate to PROMs?
We conducted a mixed-methods study of 296 individuals diagnosed with IBD in Canada. The survey included a set of validated measures that assessed depression, fatigue, satisfaction with life, disease severity, and several open-ended questions.
Thematic analysis of open-ended responses revealed five themes that highlighted the ways a diagnosis was delayed or facilitated: symptom ambiguity, fear and denial, patient-provider communication breakdown, misdiagnosis and self-doubt, and self-advocacy. Quantitative findings revealed that a longer time to receive a diagnosis was significantly correlated with higher levels of depression (r = .26) and fatigue (r = .25), reduced satisfaction with life (r = - .25), and greater disease severity (r = - .22). We used the data to generate a framework called the Diagnostic Pathways Model to illustrate the diagnostic process of a chronic disease such as IBD.
DDs involve the interacting roles of patient, medical, and communication factors, and a DD can negatively impact a patient's quality of life. Implications for physician-patient communication and public information are discussed.
炎症性肠病（IBD）是一种影响消化系统的慢性疾病，其症状通常呈发作性、不可预测、具有社会污名化且会影响生活质量。虽然及时诊断可降低并发症风险并改善健康结果，但诊断延迟很常见。我们的研究使用了来自被诊断为IBD的个体的患者报告结局测量（PROMs）的叙述和数据，以研究：（1）哪些因素有助于或阻碍IBD的及时诊断？以及（2）诊断延迟与PROMs有何关系？
我们对加拿大296名被诊断为IBD的个体进行了一项混合方法研究。该调查包括一组经过验证的测量方法，用于评估抑郁、疲劳、生活满意度、疾病严重程度以及几个开放式问题。
对开放式回答的主题分析揭示了五个主题，突出了诊断延迟或促进的方式：症状模糊、恐惧与否认、医患沟通障碍、误诊与自我怀疑以及自我维权。定量研究结果显示，诊断时间越长与抑郁水平越高（r = 0.26）、疲劳程度越高（r = 0.25）、生活满意度降低（r = -0.25）以及疾病严重程度越高（r = -0.22）显著相关。我们利用这些数据生成了一个名为诊断途径模型的框架，以说明诸如IBD等慢性疾病的诊断过程。
诊断延迟涉及患者、医疗和沟通因素的相互作用，且诊断延迟会对患者的生活质量产生负面影响。讨论了对医患沟通和公共信息的启示。
