Calvet Xavier, Argüelles-Arias Federico, López-Sanromán Antonio, Cea-Calvo Luis, Juliá Berta, de Santos Cristina Romero, Carpio Daniel
Hospital de Sabadell. Corporació Sanitària Universitària Parc Taulí, Sabadell, Spain.
Centro de investigación biomédica en red de enfermedades hepáticas y digestivas (CIBEREHD), Spain.
Patient Prefer Adherence. 2018 Sep 18;12:1815-1823. doi: 10.2147/PPA.S175026. eCollection 2018.
Ulcerative colitis (UC) may cause many patients to miss out on important personal and professional opportunities. We therefore conducted a survey (UC-LIFE) to assess patients' perceptions of the impact of UC on social and professional lives.
Consecutive unselected UC patients aged ≥18 years were recruited from 38 outpatient clinics in Spain. Patients completed the survey at home, returning it by post. The survey comprised 44 multiple-choice questions, including questions about the impact of UC on social, personal, professional, and academic activities.
Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years; 47% women). High proportions of patients considered their disease "sometimes", "frequently" or "mostly/always" influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). Patients also reported that UC influenced their decision to have children (17.2%), or their ability to take care of children (40.7%); these percentages were higher in women and in younger patients. Overall, 47.0% of patients declared that UC influenced the kind of job they performed, 20.3% had rejected a job due to UC, 14.7% had lost a job due to UC, and 19.4% had had academic problems due to UC.
Beyond symptoms alone, UC imposes an enormous additional burden on patients' social, professional, and family lives. This extra burden clearly needs to be addressed so that the ultimate goal of IBD treatment - normalization of patient quality of life - can be attained by as many patients as possible.
溃疡性结肠炎（UC）可能导致许多患者错过重要的个人和职业机会。因此，我们开展了一项调查（UC-LIFE），以评估患者对UC对其社交和职业生活影响的看法。
从西班牙38家门诊连续招募年龄≥18岁、未经挑选的UC患者。患者在家中完成调查，并通过邮寄方式返还。该调查包括44个多项选择题，涵盖UC对社交、个人、职业和学术活动影响的相关问题。
在受邀的585名患者中，436名（75%）返还了调查问卷（平均年龄46岁；47%为女性）。很大比例的患者认为其疾病“有时”“经常”或“大多/总是”影响休闲活动（65.1%）、娱乐或职业活动（57.6%），或与亲戚或朋友的关系（9.9%）。患者还报告称，UC影响了他们生育的决定（17.2%），或照顾孩子的能力（40.7%）；女性和年轻患者中的这些比例更高。总体而言，47.0%的患者宣称UC影响了他们所从事的工作类型，20.3%的患者因UC拒绝了一份工作，14.7%的患者因UC失去了一份工作，19.4%的患者因UC出现了学业问题。
除了症状本身，UC还给患者的社交、职业和家庭生活带来了巨大的额外负担。显然需要解决这一额外负担，以便让尽可能多的患者实现IBD治疗的最终目标——患者生活质量正常化。
