Roos Susanne, Liedberg Gunilla M, Hellström Ingrid, Wilhelmsson Susan
Susanne Roos, PhD, RN, is Registered Nurse, Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden. Gunilla M. Liedberg, PhD, OTR, is Associate Professor, Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden. Ingrid Hellström, PhD, RN, is Associate Professor, Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden. Susan Wilhelmsson, PhD, RN, is Associate Professor, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
Gastroenterol Nurs. 2019 Nov/Dec;42(6):496-503. doi: 10.1097/SGA.0000000000000377.
Studies show that people with celiac disease have reduced well-being and have persistent symptoms, mainly related to the gastrointestinal tract. The aim of this study was to analyze how persons in a celiac disease member association report their symptoms, health, and life satisfaction. A questionnaire, with both open and closed questions, was distributed to all members (n = 726) of a celiac association in the southeast of Sweden. The response rate was 74.5%, of which 524 (72%) said they had received a celiac disease diagnosis and were thus included in the study. Almost half of the participants (40.7%-42.2%) stated that they had persistent celiac disease symptoms despite following a gluten-free diet. Diarrhea, abdominal pain, and congestion were persistent symptoms reported and could contribute to a lower health status compared with people without persistent symptoms. The life satisfaction scale (LiSat-9) showed differences in 5 of 9 variables between the groups. Living with celiac disease is far from easy when you have persistent symptoms. People with celiac disease require follow-up by healthcare services, and a new treatment needs to be developed because following the gluten-free diet alone does not seem to alleviate symptoms in everyone.
研究表明，患有乳糜泻的人幸福感降低且症状持续存在，主要与胃肠道有关。本研究的目的是分析乳糜泻患者协会中的人员如何报告他们的症状、健康状况和生活满意度。一份包含开放式和封闭式问题的问卷被分发给瑞典东南部一个乳糜泻协会的所有成员（n = 726）。回复率为74.5%，其中524人（72%）表示他们已被诊断为乳糜泻，因此被纳入研究。几乎一半的参与者（40.7%-42.2%）表示，尽管遵循无麸质饮食，但他们仍有持续的乳糜泻症状。腹泻、腹痛和肠胃胀气是报告的持续症状，与没有持续症状的人相比，这些症状可能导致健康状况较低。生活满意度量表（LiSat-9）显示，两组之间9个变量中的5个存在差异。当你有持续症状时，患有乳糜泻的生活远非易事。乳糜泻患者需要医疗服务的随访，并且需要开发新的治疗方法，因为仅遵循无麸质饮食似乎并不能缓解每个人的症状。
