An Altered Perception of Normal: Understanding Causes for Treatment Delay in Women with Symptomatic Uterine Fibroids
An Altered Perception of Normal: Understanding Causes for Treatment Delay in Women with Symptomatic Uterine Fibroids
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DOI：
10.1089/jwh.2015.5531
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发表时间：
2016-08-01
影响因子：
3.5
通讯作者：
Marsh, Erica E.
中科院分区：
文献类型：
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作者：
Ghant, Marissa S.;Sengoba, Katherine S.;Marsh, Erica E.
背景：子宫肌瘤是良性肿瘤，是美国子宫切除术的主要原因。尽管子宫肌瘤的发病率和相关发病率很高，但几乎没有定性数据来描述是什么驱使妇女为其子宫肌瘤寻求治疗行为。方法：有症状或最近治疗的子宫肌瘤妇女完成了深入的访谈和人口统计调查。访谈被逐字转录，并上传到NVivo版本10，用于数据管理和主题编码。编码员确定了访谈中出现的主要主题和副主题。结果：60名女性(n=60)完成了采访。编码员的kappa为0.94。参与者的平均年龄为43.0+/-6.8岁。61.7%的参与者自认为非裔美国人，25.0%的人是白人，8.3%的人是西班牙裔，5.0%的人是亚洲人。许多妇女报告说，尽管经历了严重的症状，但她们的子宫肌瘤仍被延误了诊断。有五个子主题确定了女性推迟寻求治疗的原因，包括认为她们的症状是“正常的”，她们对肌瘤知识缺乏，她们不认为自己有患肌瘤的风险，她们采取基于回避的应对策略，和/或她们脱离她们的肌瘤。结论：许多有症状的女性肌瘤患者长期生活在这种情况下，没有寻求治疗。似乎对一些人来说，对子宫肌瘤和正常月经的有限知识可能会导致对子宫出血的正常看法的扭曲，从而导致有限的治疗寻求行为。其他人知道自己的症状不正常，但只是简单地避免了这个问题。需要以患者为中心和以社区为基础的教育，以提高妇女对肌瘤和症状的了解，并推广治疗方案。
Background: Uterine fibroids are benign tumors that are the leading cause of hysterectomy in the United States. Despite their high prevalence and associated morbidity, there are little qualitative data characterizing what drives women's treatment-seeking behavior for their fibroids.Methods: Women with symptomatic or recently treated uterine fibroids completed in-depth interviews and demographic surveys. Interviews were transcribed verbatim and uploaded to NVivo version 10 for data management and thematic coding. Coders identified major themes and subthemes that emerged from the interviews.Results: Sixty women (n = 60) completed the interviews. The kappa among coders was 0.94. The mean age of participants was 43.0 +/- 6.8. 61.7% of participants self-identified as African American, 25.0% as Caucasian, 8.3% as Hispanic, and 5.0% as Asian. Many women reported obtaining a delayed diagnosis for their uterine fibroids despite experiencing severe symptoms. There were five subthemes that identified why women delayed seeking treatment, which included the perception that their symptoms were "normal,'' they had a low knowledge of fibroids, they did not perceive themselves to be at risk for fibroids, they engaged in avoidance-based coping strategies, and/or they dissociated themselves from their fibroids.Conclusions: Many women with symptomatic fibroids live with this condition chronically without seeking care. It appears that for some, limited knowledge regarding fibroids and normal menstruation may lead to a distorted view of what is normal with regard to uterine bleeding, resulting in limited treatment seeking behavior. Others know their symptoms are abnormal but simply avoid the problem. There is a need for patient-centered and community-based education to improve women's knowledge of fibroids and symptoms and to promote treatment options.