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炎症性肠病患者自我报告的担忧:一种特定性别的主观生活质量指标。

Patient self-reported concerns in inflammatory bowel diseases: A gender-specific subjective quality-of-life indicator.

作者信息

Pittet Valérie, Vaucher Carla, Froehlich Florian, Burnand Bernard, Michetti Pierre, Maillard Michel H

机构信息

Institute of Social & Preventive Medicine (IUMSP), Lausanne University Hospital, Lausanne, Switzerland.

Division of Gastroenterology & Hepatology, Lausanne University Hospital, Lausanne, Switzerland.

出版信息

PLoS One. 2017 Feb 10;12(2):e0171864. doi: 10.1371/journal.pone.0171864. eCollection 2017.

DOI:10.1371/journal.pone.0171864
PMID:28187201
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5302448/
Abstract

BACKGROUND

Patient-reported disease perceptions are important components to be considered within a holistic model of quality of care. Gender may have an influence on these perceptions. We aimed to explore gender-specific concerns of patients included in a national bilingual inflammatory bowel disease cohort.

METHODS

Following a qualitative study, we built a questionnaire comprising 37 items of concern. Answers were collected on a visual analog scale ranging from 0 to 100. Principal axis factor analysis was used to explore concern domains. Linear multiple regressions were conducted to assess associations with patient characteristics.

RESULTS

Of 1102 patients who replied to the survey, 54% were female and 54% had Crohn's disease. We identified six domains of concern: socialization and stigmatization, disease-related constraints and uncertainty, symptoms and their impact on body and mind, loss of body control (including sexuality), disease transmission, and long-term impact of the disease. Cancer concerns were among the highest scored by all patients (median 61.8). Severity of symptoms was the only factor associated with concerns, unrelated to dimension and gender (p<0.015). In women, being >40 years decreased disease-related constraints and uncertainty concerns, and being at home or unemployed increased them. Treatments were associated with increased socialization and stigmatization and with increased disease-related constraints and uncertainty concerns in men. Overall, psychosomatic characteristics were highly associated with concerns for both men and women. Depending on the concern dimensions, increased levels of concern were associated with the highest signs of anxiety in women or depression in men, as well as lower health-related quality of life in men.

CONCLUSIONS

Patients have numerous concerns related to their illness that need to be reassessed regularly. Concerns differ between men and women, suggesting that information and communication about the disease should take gender differences and subjective perceptions of quality of life into consideration.

摘要

背景

患者报告的疾病认知是整体医疗质量模型中需要考虑的重要组成部分。性别可能会对这些认知产生影响。我们旨在探讨纳入全国性双语炎症性肠病队列中的患者的性别特异性担忧。

方法

在一项定性研究之后,我们构建了一份包含37项担忧内容的问卷。答案采用0至100的视觉模拟量表收集。主成分因子分析用于探索担忧领域。进行线性多元回归以评估与患者特征的关联。

结果

在1102名回复调查的患者中,54%为女性,54%患有克罗恩病。我们确定了六个担忧领域:社交与污名化、疾病相关的限制和不确定性、症状及其对身心的影响、身体控制的丧失(包括性方面)、疾病传播以及疾病的长期影响。癌症担忧在所有患者中得分最高(中位数61.8)。症状严重程度是与担忧相关的唯一因素,与维度和性别无关(p<0.015)。在女性中,年龄大于40岁会降低对疾病相关限制和不确定性的担忧,而居家或失业则会增加这些担忧。治疗与男性的社交和污名化增加以及疾病相关的限制和不确定性担忧增加有关。总体而言,身心特征与男性和女性的担忧高度相关。根据担忧维度,担忧程度的增加与女性的最高焦虑迹象或男性的抑郁以及男性较低的健康相关生活质量相关。

结论

患者对自身疾病有许多担忧,需要定期重新评估。男性和女性的担忧有所不同,这表明关于疾病的信息和沟通应考虑性别差异以及对生活质量的主观认知。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/a5cb8a9303dd/pone.0171864.g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/eb8236b2bd69/pone.0171864.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/0252516901be/pone.0171864.g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/b44846a40ce9/pone.0171864.g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/a5cb8a9303dd/pone.0171864.g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/eb8236b2bd69/pone.0171864.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/0252516901be/pone.0171864.g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/b44846a40ce9/pone.0171864.g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fd8/5302448/a5cb8a9303dd/pone.0171864.g004.jpg

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