Assessment of menstrual cycles and related challenges in adolescents with moderate to severe intellectual disabilities

Introduction: Managing menstruation in adolescents with intellectual disabilities is a complex process for both the individual and the caregiver. Failure to recognize menstruation, difficulties in hygiene management, and behavioral changes can increase the caregiver's burden. This study aims to investigate menstrual characteristics and the difficulties experienced by adolescents with moderate to severe intellectual disabilities and their caregivers during menstruation among those who visit the pediatric neurology outpatient clinics at Ankara Bilkent City Hospital, which has a high annual patient intake. Material-Methods: This cross-sectional study included 116 female adolescents aged 10-19 years who were diagnosed with moderate to severe intellectual disability and who visited pediatric neurology outpatient clinics between June 2024 and June 2025. Data were collected prospectively over a 1-year period from caregivers using a data collection form prepared by the researchers. Patients' physical disability levels were determined using the Gross Motor Function Classification Scale (GMFCS), and caregivers' depression levels were determined using the Patient Health Questionnaire (PHQ-9). The patients' anthropometric data, such as age, body weight (BW), height, body mass index (BMI), and clinical findings, menstrual cycle characteristics, behavioral changes observed during the menstrual cycle, caregivers' sociodemographic data, thoughts about the menstrual cycle, and difficulties they experienced were recorded. Based on the results obtained, the depression levels of the caregiving mothers were compared. The data were analyzed using the SPSS program. Findings: This cross-sectional study included 116 patients with moderate-to-severe epilepsy who attended pediatric neurology outpatient clinics between June 2024 and June 2025. Of these, 74 (63.7%) were in the post-menarcheal period, while 42 (36.3%) were in the pre-menarcheal period. Among patients in the post-menarcheal period, 47 (63.5%) had regular menstruation and 27 (36.5%) had irregular menstruation. Within this group, 15 caregivers (20.3%) expressed a desire for menstruation to be suppressed, whereas 59 (79.7%) did not wish for suppression. Of the caregivers who requested menstrual suppression, 14 (93.3%) stated that menstruation negatively affected the patient's comfort, and 1 (6.7%) reported concern about potential peer bullying. Among caregivers who did not wish to suppress menstruation, 31 (52.5%) described menstruation as a natural process, while 20 (33.9%) expressed concern that suppression might be harmful to the patient. Regarding behavioral changes during menstruation in the post-menarcheal group, 22 patients (29.7%) exhibited no behavioral changes, and 21 (28.4%) became more irritable only. The remaining 31 patients (41.9%) demonstrated behavioral alterations, including sleep disturbances, appetite changes, aggression toward others, attempts to remove sanitary pads or diapers, and increased seizure frequency. When comparing PHQ-9 scores of caregivers of patients in the pre-menarcheal and post-menarcheal periods, no statistically significant difference was found (p=0.643). However, PHQ-9 depression scores were significantly higher among parents of patients who were unable to express their menstrual status verbally and among parents of patients with fecal incontinence (p=0.005 and p=0.040, respectively). Results: Menstrual management represents an important but often under recognized aspect of care in adolescents with moderate to severe intellectual disabilities. In the present study, most caregivers did not prefer menstrual supression, frequently perceiving menstruation as a natural physiological process and expressing concerns about potential harm from suppression. Nevertheless, a notable proportion of caregivers reported behavioral changes during menstruation, including irritability, sleep disturbances, and increased seazure frequency, suggesting that menstruation may exacerbate clinical and behavioral challenges in this population. Caregivers requesting menstrual supression primarily cited the negative impact of menstruation on patient comfort, indicating that menstrual-related difficulties may influence caregiver preferences. Although caregiver depressive symptoms did not differ between pre and post-menarcheal groups, higher depression scores among parents of patients unable to verbally communicate their menstrual status and those with fecal incontinence highlight the additional caregiving burden associated with communication and continence diffuculties. These findings emphasize the need for individualized, multidisciplinary approaches to menstrual management in adolescents with neurological disabilities. Key Words: Intellectual disability, adolescent, menstruation, caregiver, depression