Asadzadeh Aghdaei Hamid, Ghasemi Faranak, Nooraliee Mina, Fazeli Mohammad Sadegh, Sorrentino Dario, Balaii Hedieh, Shahrokh Shabnam
Basic and Molecular Epidemiology of Gastrointestinal Disorders Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
Department of surgery, Imam Khomeini Medical complex, Tehran University of Medical Sciences, Tehran, Iran.
Gastroenterol Hepatol Bed Bench. 2017 Winter;10(Suppl1):S27-S32.
The aim of this study was to explore the quality of life (QoL) in a group of patients who had an intractable disease on medical therapy including biologics and underwent surgery.
Quality of life of patients with ulcerative colitis (UC) has been measured with a series of multiple questionnaires.
An observational cross sectional study was carried out on 68 patients with documented UC referring to an IBD clinic in a tertiary hospital. Patients with UC who had a colectomy because of intractable disease and were in remission for a year were eligible for enrollment Patients were instructed to fill the SF-36 Questionnaire (interviewer-administered) regarding quality of life. Side effects were evaluated with another questionnaire. Results were compared with the normal population of the community.
In comparison with normal population, patients having colectomy have better general QoL. Impotency and incontinency were most common adverse events after colectomy while the adverse events that decreased the QoL significantly were anal secretions and number of bowel movements per day without using antidiarrheal- drugs.
In conclusion, our study showed a significant improvement of general QoL in a selected group of UC patients, who were in clinical remission following IPAA and only number of bowel movements per day and anal secretions significantly impaired their QoL. We suggest that a disease-specific questionnaire should be designed, making changes in health-related QOL more detectable over time, since it is more sensitive to these changes in IBD patients than a general questionnaire.
本研究旨在探讨一组接受包括生物制剂在内的药物治疗且患有难治性疾病并接受手术的患者的生活质量（QoL）。
溃疡性结肠炎（UC）患者的生活质量已通过一系列多份问卷进行测量。
对一家三级医院的炎症性肠病门诊的68例有记录的UC患者进行了一项观察性横断面研究。因难治性疾病接受结肠切除术且缓解一年的UC患者符合入组条件。患者被要求填写关于生活质量的SF-36问卷（由访谈者管理）。用另一份问卷评估副作用。结果与社区正常人群进行比较。
与正常人群相比，接受结肠切除术的患者总体生活质量更好。阳痿和失禁是结肠切除术后最常见的不良事件，而显著降低生活质量的不良事件是肛门分泌物和在不使用止泻药的情况下每天的排便次数。
总之，我们的研究表明，一组UC患者在回肠袋肛管吻合术（IPAA）后临床缓解，其总体生活质量有显著改善，只有每天的排便次数和肛门分泌物显著损害了他们的生活质量。我们建议应设计一份针对特定疾病的问卷，随着时间的推移，使与健康相关的生活质量变化更易于察觉，因为它对IBD患者的这些变化比一般问卷更敏感。
