Experience of Symptoms and Disease Impact in Patients with Adenomyosis.

Experience of Symptoms and Disease Impact in Patients with Adenomyosis.
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DOI:
10.1007/s40271-017-0284-2
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发表时间:
2018-06
期刊:
The patient
影响因子:
--
通讯作者:
Lukes AS
Lukes AS
中科院分区:
其他
文献类型:
--
作者:
Nelsen LM;Lenderking WR;Pokrzywinski R;Balantac Z;Black L;Pokras S;Enslin MB;Cooper M;Lukes AS

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子宫腺肌病是一种知之甚少的良性子宫疾病。在这项研究中,患者访谈被用来描述子宫腺肌病的症状和影响。这是一项横断面研究,从美国五家诊所和一个与健康相关的社交网络论坛招募了子宫腺肌病患者。参与者(年龄18-55岁)为绝经前,有规律的月经周期史。受试者被问及子宫腺肌病的经历、症状和对日常活动的影响(概念启发),随后被问及症状的发生、相对严重程度和影响(卡片分类练习)。总共有31名女性接受了采访。首次出现子宫腺肌病症状的平均持续时间为5.7年;41.9%的患者报告了严重/非常严重的子宫腺肌病。在概念启发中报告了子宫腺肌病的50多个症状和30个影响;87%的症状在7次访谈后报告,78%的影响在5次访谈后报告,表明症状负担显著且呈现一致。最常见的症状是月经大出血(87%)、痉挛(84%)和月经出血期间的血块(84%)。最常见的影响是繁重的自我保健卫生(71%)和疲劳/低能量(71%)。在卡片分类练习中,最常见的被认可的症状是月经期间疼痛/月经痉挛和月经大出血(这两种症状经常被评为严重)。影响最大的症状是月经大出血。主动了解妇女患子宫腺肌病的经历可能会改善对这种情况的管理。这项研究为了解他们的经验和有关子宫腺肌病症状的新信息提供了第一步。本文的在线版本(10.1007/s40271-0170284-2)包含补充材料,可供授权用户使用。
Adenomyosis is a poorly understood, benign disease of the uterus. In this study, patient interviews were conducted to characterize the symptoms and impact of adenomyosis. 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). 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. 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. The online version of this article (10.1007/s40271-017-0284-2) contains supplementary material, which is available to authorized users.
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