Zihinsel Yetersizliğe Eşlik Eden Genetik Sendromlarda Menstruasyon Sorunları ve Menstruasyon İlişkili Yaşam Kalitesinin Değerlendirilmesi

Abstract

Menstruation can be more complicated for adolescents with intellectual disabilities (ID) due to concerns surrounding menstrual hygiene, abuse risk, changes in seizure patterns, and mood. This study aimed to assess the menstrual history, difficulties experienced, family attitudes about menstruation, and the effects of menstruation on quality of life (QoL) in females with a genetic syndrome accompanying ID. This study was designed as a prospective cross-sectional study and was conducted at Hacettepe University İhsan Doğramacı Children's Hospital, Division of Adolescent Medicine, between January 2020 and June 2021.The study population was comprised of 49 patients between the ages of between 10 and 24 who were clinically followed between January 1997-December 2020 at Hacettepe University Children's Hospital, Division of Pediatric Genetics with a genetic syndrome accompanied by ID (case group) and 50 age-matched healthy controls (control group). For patients with mild ID, both the adolescents (n=12) and the caregivers (n= 16) completed the scales, whereas, for those with moderate-severe ID, only the caregivers were questioned (n=33). Demographic data, a survey developed by the authors evaluating menstrual history were asked. "The Childhood health assessment questionnaire" (CHAQ) was used to evaluate physical impairment. “The Pediatric Quality of Life Inventory” (PedsQL), which was queried both generally and during menstruation, was collected. Menstrual history was not statistically different between the groups. Menstruation-related school absenteeism was higher among the ID group (8% vs. 40.5%, p<0.001). We found that 73% of the cases in the study needed help with menstruation care. The level of ID was significantly related to the need for help with menstrual hygiene (p<0.001). The patients' social, school, psychosocial functioning, and total QoL scores during the menstrual period were significantly lower than the control. As the ID levels increase, the QoL decreases significantly (p<0.001). While the physical and total QoL scores decreased significantly with menstruation in the control group, mothers reported a significant decrease in the physical, emotional, social, psychosocial functionality and total quality of life scores of their daughters with ID during menstrual periods. None of the participants receive pre-menarche counselling, similarly none of the mothers in our study requested menstrual suppression. In conclusion, although menstrual patterns in girls with ID are similar to those without disabilities, QoL while menstruation was significantly lower. When we compared QoL in the menstrual and non-menstrual period, QoL decreased significantly while menstruating in the patients with ID. Despite a decrease in QoL, an increase in school absenteeism, and a high percentage of patients needing assistance while menstruating, none of the mothers requested menstrual suppression. Increasing the knowledge level of the families concerning menstruation and providing adequate support for the development of the skills to accomplish personal care of the adolescent during menstruation can provide an increase in the independence and functionality of the adolescents with ID, and reduce anxiety for both the individual and patient and decrease school absenteeism.