Gastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark
The Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark.
BMJ Open Gastroenterol. 2022 Oct;9(1). doi: 10.1136/bmjgast-2022-000994.
Physicians tend to focus on biomedical targets while little is known about issues important to patients. We aimed to identify critical concepts impacting patients with inflammatory bowel disease (IBD).
We performed a survey of patients with IBD in biologic therapy (n=172) and used a validated qualitative method called group concept mapping (GCM) in patient workshops. The survey included 13 questions on attitudes toward symptoms and issues related to IBD. In the eight workshops, patients (n=26) generated statements later clustered into concepts identifying issues impacting a patient's life. Patients ranked the statements.
In the survey, patients' mean age were 40 years (SD 13), 53% were women, and 38% had ulcerative colitis. They identified fatigue (57%) and stool frequency (46%) as the most critical symptoms impacting their daily lives regardless of disease activity. In the GCM workshops with Crohn's disease (n=13) (median age 42 years (IQR 39-51) and 62% were women), 335 statements divided among 10 concepts were generated, and the three most important concepts were 'Positive attitudes', 'Accept and recognition', and 'Sharing knowledge and experiences in life with Crohn's disease'. In the workshops with ulcerative colitis (n=13) (median age 43 years (IQR 36-49) and 69% were women), 408 statements divided into 11 concepts were generated; the most important concepts were 'Take responsibility and control over your life', 'Medication', and 'Everyday life with ulcerative colitis'.
Focusing solely on IBD symptoms, patients identified fatigue and stool frequency to impact daily life the most. However, when investigating the disease burden in a broader perspective beyond classic IBD symptoms, patients identified concepts with focus on emotional health to be most important.
The Copenhagen University Hospital, Herlev and Gentofte approved the questionnaire and methodology (work-zone no: 18015429).
医生往往专注于生物医学靶点，而对患者重要的问题知之甚少。我们旨在确定影响炎症性肠病（IBD）患者的关键概念。
我们对接受生物治疗的 IBD 患者（n=172）进行了一项调查，并在患者研讨会上使用了一种经过验证的定性方法，即群体概念映射（GCM）。该调查包括 13 个关于对症状的态度和与 IBD 相关问题的问题。在八次研讨会上，患者（n=26）生成了后来聚类为确定影响患者生活的问题的概念的陈述。患者对陈述进行了排名。
在调查中，患者的平均年龄为 40 岁（标准差 13），53%为女性，38%患有溃疡性结肠炎。无论疾病活动度如何，他们都认为疲劳（57%）和排便频率（46%）是对日常生活影响最大的关键症状。在克罗恩病的 GCM 研讨会上（n=13）（中位年龄 42 岁（IQR 39-51），62%为女性），生成了 335 条分为 10 个概念的陈述，三个最重要的概念是“积极的态度”、“接受和认可”和“分享克罗恩病生活中的知识和经验”。在溃疡性结肠炎的研讨会上（n=13）（中位年龄 43 岁（IQR 36-49），69%为女性），生成了 408 条分为 11 个概念的陈述；最重要的概念是“对生活负责并控制自己的生活”、“药物”和“溃疡性结肠炎的日常生活”。
仅关注 IBD 症状，患者认为疲劳和排便频率对日常生活的影响最大。然而，当从超越经典 IBD 症状的更广泛角度研究疾病负担时，患者确定以关注心理健康为重点的概念是最重要的。
哥本哈根大学医院、赫勒莱和根托夫特批准了该问卷和方法（工作区编号：18015429）。
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