Study Objective

Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a female reproductive disorder characterized by the absence or underdevelopment of the uterus, cervix and vagina. Limited research has examined factors related to psychological adjustment in MRKH. This study aimed to explore associations among illness representations, self-concept, psychological distress, and self-esteem in MRKH.

Design

Cross-sectional.

Setting

Participants were recruited globally online and from patient meetings.

Participants

A total of 263 patients with MRKH (age 16.1-74.4 years; mean = 31.7 years) completed questionnaires.

Intervention

None.

Main Outcome Measures

Validated self-reported measures of psychological distress and self-esteem (outcomes) and illness representations, self-concept, social support-seeking, and positive affect (hypothesized correlates) were explored in correlation and hierarchical regression analyses, alongside demographic and clinical variables.

Results

Younger age and shorter time since diagnosis was associated with higher distress and lower self-esteem. Patients with MRKH reported significantly higher distress and lower self-esteem than the general population. Higher distress and lower self-esteem were associated with higher reported engulfment (defining one's identity or feeling consumed by MRKH) and beliefs about the serious consequences of MRKH, and lower reported MRKH coherence, enrichment (positive changes to self-identity because of MRKH) and positive affect.

Conclusions

Findings suggest that the impact of MRKH on identity plays an important role in adjustment. High perceived coherence and maintenance of positive affect may play a protective role in psychological adjustment. A 12-month follow-up study is planned to examine associations among these variables longitudinally. Baseline data suggest that early availability of psychological support would be beneficial, and interventions focused on identity and psychoeducation about MRKH would be valuable.

中文翻译：

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从吞噬到富足：梅耶-罗基坦斯基-库斯特-豪瑟氏综合症的疾病表征，自我概念和心理适应之间的联系。

研究目的

Mayer-Rokitansky-Küster-Hauser综合征（MRKH）是一种女性生殖疾病，其特征是子宫，子宫颈和阴道不存在或发育不全。有限的研究已经检查了与MRKH中的心理调节有关的因素。本研究旨在探讨MRKH中疾病表现，自我概念，心理困扰和自尊之间的关联。

设计

横截面

设置

参与者是在全球范围内通过在线和患者会议招募的。

参加者

263名MRKH患者（年龄16.1-74.4；M = 31.7）填写了问卷

介入

没有。

主要观察指标

在相关性和层次回归分析以及人口统计学和临床​​变量中，探索了经过验证的自我报告的心理困扰和自尊（结果）和疾病表征，自我概念，寻求社会支持和积极影响（假设关联）的量度。

结果

自诊断以来年龄越小，时间越短，患病率越高，自尊心越低。患有MRKH的人报告的苦恼和自尊心比一般人高得多。更高的痛苦和更低的自尊与更高的报道吞噬（定义一个人的身份或MRKH所消耗的感觉）和对MRKH的严重后果的信念以及更低的报道的MRKH的连贯性，充实（由于MRKH导致的自我认同的积极改变）有关。和积极的影响。

结论

研究结果表明，MRKH对身份的影响在调整中起着重要作用。高度感知的连贯性和积极影响的维持可能在心理调节中起保护作用。计划进行为期12个月的随访研究，以纵向检查这些变量之间的关联。基线数据表明，尽早获得心理支持将是有益的，针对MRKH的身份和心理教育的干预措施将是有价值的。