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腺肌病患者的症状和疾病影响体验。

Experience of Symptoms and Disease Impact in Patients with Adenomyosis.

机构信息

Value Evidence and Outcomes, GSK, 1250 South Collegeville Road, Building 4, 4th floor, Collegeville, PA, 19426, USA.

Evidera, Waltham, MA, USA.

出版信息

Patient. 2018 Jun;11(3):319-328. doi: 10.1007/s40271-017-0284-2.

DOI:10.1007/s40271-017-0284-2
PMID:29197944
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5948244/
Abstract

BACKGROUND

Adenomyosis is a poorly understood, benign disease of the uterus.

OBJECTIVE

In this study, patient interviews were conducted to characterize the symptoms and impact of adenomyosis.

METHODS

This was a cross-sectional study in which women with adenomyosis were recruited from five US clinics and a health-related social network forum. Participants (aged 18-55 years) were pre-menopausal with a history of regular menstrual cycles. Participants were interviewed about their experiences with adenomyosis, symptoms and impacts on day-to-day activities (concept elicitation), and subsequently about the occurrence, relative severity, and impact of symptoms (card-sorting exercise).

RESULTS

In total, 31 women were interviewed. Mean duration since onset of first adenomyosis symptom was 5.7 years; 41.9% reported severe/very severe adenomyosis. Over 50 symptoms and 30 impacts of adenomyosis were reported in the concept elicitation; 87% of symptoms were reported after 7 interviews and 78% of impacts after 5 interviews, indicating a condition with a significant symptom burden and a consistent presentation. The most common symptoms were heavy menstrual bleeding (87%), cramps (84%), and blood clots during menstrual bleeding (84%). The most common impacts were burdensome self-care hygiene (71%), and fatigue/low energy (71%). In the card-sorting exercise, the most commonly endorsed symptoms were pain during menstruation/menstrual cramps and heavy menstrual bleeding (both frequently rated as severe). The symptom with the highest impact was heavy menstrual bleeding.

CONCLUSION

Initiatives to understand women's experiences with adenomyosis may improve management of the condition. This study provides a first step in understanding their experience and new information on the symptom profile of adenomyosis.

摘要

背景

子宫腺肌病是一种尚未被充分认识的良性子宫疾病。

目的

本研究通过患者访谈,对子宫腺肌病的症状和影响进行了描述。

方法

这是一项横断面研究,在美国五家诊所和一个与健康相关的社交网络论坛招募了患有子宫腺肌病的女性。参与者(年龄 18-55 岁)为绝经前女性,有规律的月经周期史。对参与者进行了关于其子宫腺肌病患病经历、症状以及对日常活动影响的访谈(概念发掘),随后对症状的发生、相对严重程度和影响(卡片分类)进行了访谈。

结果

共对 31 名女性进行了访谈。首次出现子宫腺肌病症状至访谈时的平均时间为 5.7 年;41.9%的参与者报告子宫腺肌病严重/非常严重。在概念发掘中报告了 50 多种症状和 30 多种子宫腺肌病的影响;87%的症状在访谈 7 次后报告,78%的影响在访谈 5 次后报告,表明该疾病的症状负担重且表现一致。最常见的症状是月经过多(87%)、痉挛(84%)和月经出血期间有血块(84%)。最常见的影响是自我护理卫生负担重(71%)和疲劳/精力不足(71%)。在卡片分类中,最常被认可的症状是月经期间/经期痉挛疼痛和月经过多(均常被评为严重)。影响最大的症状是月经过多。

结论

了解女性子宫腺肌病患病经历的相关举措可能有助于改善疾病的管理。本研究初步了解了女性的患病经历,并提供了有关子宫腺肌病症状特征的新信息。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/873f/5948244/07a4fdf17397/40271_2017_284_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/873f/5948244/07a4fdf17397/40271_2017_284_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/873f/5948244/07a4fdf17397/40271_2017_284_Fig1_HTML.jpg

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Int J Gynecol Pathol. 2015 May;34(3):245-52. doi: 10.1097/PGP.0000000000000147.
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Impact of endometriosis on women's lives: a qualitative study.内异症对女性生活的影响:一项定性研究。
子宫腺肌病患者的生活经历及对诊断过程的认知:一项范围综述
BMJ Open. 2025 Jan 20;15(1):e087122. doi: 10.1136/bmjopen-2024-087122.
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Grading Sonographic Severity of Adenomyosis: A Pilot Study Assessing Feasibility and Interobserver Reliability.子宫腺肌病超声严重程度分级:一项评估可行性和观察者间可靠性的初步研究
J Ultrasound Med. 2025 Mar;44(3):495-506. doi: 10.1002/jum.16612. Epub 2024 Nov 8.
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WeChat assisted electronic symptom measurement for patients with adenomyosis.微信辅助的子宫腺肌病患者电子症状测量。
BMC Med Inform Decis Mak. 2024 Jun 17;24(1):168. doi: 10.1186/s12911-024-02570-8.
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BMC Womens Health. 2024 Feb 3;24(1):88. doi: 10.1186/s12905-023-02840-z.
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Women's experiences of the diagnostic journey in uterine adenomyosis: a scoping review protocol.女性子宫腺肌病诊断过程体验的研究:范围综述方案。
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