Gsenger Victoria, Rodriguez Adriana, Araka Elizabeth, Oza Fouzia, Eskarous Hany, Kochar Bharati, Ananthakrishnan Ashwin N
Paracelsus Medical University Salzburg, Strubergasse 21, 5020 Salzburg, Austria.
Division of Gastroenterology, Massachusetts General Hospital-Crohn's and Colitis Center, 165 Cambridge Street, 9th Floor, Boston, MA 02114, USA.
Inflamm Bowel Dis. 2025 Jun 13;31(6):1595-1604. doi: 10.1093/ibd/izae197.
Patient concerns and preferences are important in the management of inflammatory bowel disease (IBD: Crohn's disease [CD], ulcerative colitis). In the absence of contemporary data, we aimed to determine patient concerns and preferences and establish if there are demographic or disease-related differences.
We surveyed patients with IBD at Massachusetts General Hospital between July and September 2023. The Rating Form of Inflammatory Bowel Disease Patient Concerns (RFIPC) and a set of supplemental questions rated on a visual analog scale (0-100 mm) were administered to patients and compared by age, disease type, sex, and surgery status. Additionally, a survey administered to treating providers gathered insight into the difference between patient and provider perceptions of concerns.
A total of 350 patients and 30 providers completed the survey. The mean age was 47 years; 50% were female, 49% had CD, and 80% were on advanced IBD therapy. Effects of medication (median = 54), energy level (median = 53), and having an ostomy bag (median = 52) were rated highest by patients. Older patients rated most disease complication and treatment-related concerns similar to younger adults; those aged 35-59 years had the greatest level of concern for most questions. Sex, disease activity, and prior surgical history also impacted patients' concerns. Providers perceived patients' worries as higher than those rated by patients themselves.
A shared decision-making model targeting the achievement of disease remission and addressing concerns rated highly by patients is important to meet the goal of care for patients with IBD.
患者的担忧和偏好对于炎症性肠病（IBD：克罗恩病[CD]、溃疡性结肠炎）的管理至关重要。在缺乏当代数据的情况下，我们旨在确定患者的担忧和偏好，并确定是否存在人口统计学或疾病相关差异。
我们于2023年7月至9月对马萨诸塞州总医院的IBD患者进行了调查。向患者发放了炎症性肠病患者担忧评分表（RFIPC）以及一组基于视觉模拟量表（0-100毫米）评分的补充问题，并按年龄、疾病类型、性别和手术状态进行比较。此外，对治疗提供者进行的一项调查收集了有关患者和提供者对担忧认知差异的见解。
共有350名患者和30名提供者完成了调查。平均年龄为47岁；50%为女性，49%患有CD，80%接受晚期IBD治疗。患者对药物影响（中位数=54）、能量水平（中位数=53）和佩戴造口袋（中位数=52）的评分最高。老年患者对大多数疾病并发症和治疗相关担忧的评分与年轻成年人相似；35-59岁的患者对大多数问题的担忧程度最高。性别、疾病活动度和既往手术史也影响患者的担忧。提供者认为患者的担忧程度高于患者自己的评分。
建立一个以实现疾病缓解和解决患者高度关注问题为目标的共同决策模型，对于实现IBD患者的护理目标很重要。
