Evaluation of the Quality of Life and Gynecological Follow-up of Patients Treated for Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome

Condition(s) studied

Investigational drug(s) / intervention(s)

Questionnaires: questionnaires: WHOQOL-BREF (Quality of Life Study Questionnaire), FSFI (Female Sexual Function Index), FSDS-R (The Femala sexual distress scale-revised), Rosenberg scale (self-esteem assessment)

Semi-directed interview: Semi-directed interview on the treatment pathway and the impact of utero-vaginal aplasia on intimate and personal life

Study summary

Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome affects 1 in 4,500 women and consists of utero-vaginal aplasia in 46 chromosom XX women, most often diagnosed in the presence of primary amenorrhea. This diagnosis, occurring in adolescence during the period of identity formation, can have significant psychological repercussions. This malformation can alter the body image and personal relationships of affected patients, beyond the impact on their sexual lives. Management around the disclosure is a crucial moment for these patients. Individual or group psychological support is systematically offered.

Several international studies show that these patients experience a decline in their quality of life, and they are more anxious and depressed. Participation in support groups improves this state.

The objective of this study is therefore to better understand Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome and the issues patients may face. For this reason, it seems essential to us to evaluate the overall quality of life, the quality of sexual life, the psychological state and the gynecological follow-up of women before or after treatment for vaginal aplasia.

Eligibility

Primary outcome measure(s)

• Evaluation of the overall quality of life of patients with Mayer-Rokitansky-Küster-Hauser syndrome. — One hour after the inclusion
  Comparison of the score obtained on the WHOQOL BREF questionnaire between women with Mayer-Rokitansky-Küster-Hauser syndrome and the control population (score from 0 to 100, 0 corresponding to the worst quality of life and 100 to the best possible quality of life)

Trial sites (1)

More University Hospital, Toulouse trials in France