Dharmadasa Vivica, Yip Lundström Lai Mei, Khatibi Niki, Hossain Jessica, El Kadiry Kanza, Byman Victoria, Storlåhls Anette, Björk Jan, Bresso Francesca, Kapraali Marjo, Hedin Charlotte R H
Department of Gastroenterology, Dermatovenerology and Rheumatology, Centre for Digestive Health, Karolinska University Hospital, Stockholm, Sweden.
Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden.
Scand J Gastroenterol. 2025 Jun;60(6):558-571. doi: 10.1080/00365521.2025.2501070. Epub 2025 May 10.
Inflammatory bowel diseases, Crohn's disease (CD) and ulcerative colitis (UC), are associated with reduced quality of life (QoL). By using questionnaire tools called patient-reported outcome measures (PROM), patients' well-being and health-status can be measured. The aim of this study was to identify subgroups at risk of being missed in questionnaire monitoring and assess QoL and variability of responses over time.
CD or UC, age ≥18 years, receiving biological treatment subcutaneously or intravenously, 01 August 2018 to 31 January 2020, at Karolinska University Hospital, were included. Patients completed standardised and validated questionnaires for QoL-measurements; Short Health Scale (SHS) and EuroQol 5-dimension-index (EQ5D).
412 patients, 287 (70%) Crohn's disease, 125 (30%) ulcerative colitis, 267 (65%) males, median age: 33 (range 18-85). Patients receiving subcutaneous treatment completed PROM questionnaires significantly less frequently compared with intravenous treatment (multiplicative factor 6.5, 5.7-7.5 95% CI). Reduced QoL was seen for intravenous treatment (multiplicative factor 2.0, 0.5-3.5 95% CI) and active disease (multiplicative factor -4.0, -6.1 to -1.9 95% CI). Greater variability in responses was seen in active disease, anaemia, faecal calprotectin ≥ 250 mg/kg.
Patients receiving subcutaneous treatment, equivalent to home-based treatment, completed significantly fewer PROM questionnaires and are therefore less monitored. It is therefore important to offer different modes of questionnaire administration when monitoring a heterogeneous patient population especially as we see a shift towards oral forms of therapy.
炎症性肠病，即克罗恩病（CD）和溃疡性结肠炎（UC），与生活质量（QoL）下降相关。通过使用称为患者报告结局测量（PROM）的问卷工具，可以测量患者的幸福感和健康状况。本研究的目的是识别问卷监测中可能遗漏的风险亚组，并评估生活质量和随时间变化的反应变异性。
纳入2018年8月1日至2020年1月31日在卡罗林斯卡大学医院接受皮下或静脉生物治疗、年龄≥18岁的CD或UC患者。患者完成用于生活质量测量的标准化和验证过的问卷；简短健康量表（SHS）和欧洲五维健康量表（EQ5D）。
412例患者，287例（70%）为克罗恩病，125例（30%）为溃疡性结肠炎，267例（65%）为男性，中位年龄：33岁（范围为18 - 85岁）。与静脉治疗相比，接受皮下治疗的患者完成PROM问卷的频率显著更低（乘性因子6.5，95%CI为5.7 - 7.5）。静脉治疗（乘性因子2.0，95%CI为0.5 - 3.5）和活动性疾病（乘性因子 -4.0，95%CI为 -6.1至 -1.9）患者的生活质量降低。在活动性疾病、贫血、粪便钙卫蛋白≥250mg/kg患者中观察到更大的反应变异性。
接受皮下治疗（相当于居家治疗）的患者完成的PROM问卷显著更少，因此监测也更少。因此，在监测异质性患者群体时，提供不同的问卷管理方式很重要，尤其是在我们看到治疗方式向口服形式转变的情况下。
