Assessing the Menstrual Cycle and Related Problems in Adolescents with a Genetic Syndrome Associated with Intellectual Disability.

ABSTRACT

STUDY OBJECTIVE: The aim of this study was to assess the experience and quality of life (QoL) related to menstruation in adolescents with a genetic syndrome accompanying intellectual disability (ID). METHODS: This prospective cross-sectional study was conducted on 49 adolescents with a genetic syndrome accompanied by ID, which was defined by the Wechsler Intelligence Scale for Children-Revised, and 50 unaffected controls. In a survey created by the authors, demographic information, menstrual history, and information regarding menstrual difficulties, school abstinence, dysmenorrhea, and premenstrual changes were collected. The Childhood Health Assessment Questionnaire was used to evaluate physical impairment, whereas the QoL scale was utilized to evaluate QoL in general and during menstruation. Data were collected from caregivers and additionally from the participants with mild ID, whereas in the control group, data were collected from the participants. RESULTS: Menstrual history was similar between the 2 groups. Menstruation-related school absenteeism was higher among the ID group (8% vs 40.5%, P < .001). Mothers reported that 73% of their daughters needed help with menstruation care. Social, school, psychosocial functioning, and total QoL scores during menstruation were significantly lower in the ID group when compared with the controls. A significant decrease in physical, emotional, social, psychosocial functioning, and total QoL score occurred during menstruation in the ID group. None of the mothers requested menstrual suppression. CONCLUSION: Although menstrual patterns in the 2 groups were similar, QoL decreased significantly while menstruating in the ID group. Despite a decrease in QoL, an increase in school absenteeism, and a high percentage of needing assistance while menstruating, none of the mothers requested menstrual suppression.