Abstract
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.
Key Words
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Article info
Publication history
Published online: July 17, 2020
Footnotes
The authors have no conflicts of interest to disclose.
Identification
Copyright
© 2020 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc.
