Trends in menstrual concerns and suppression in adolescents with developmental disabilities

Demonstrate changes in methods of menstrual suppression in adolescents with developmental disabilities in a recent 5-year cohort compared with an historical cohort at the same hospital.

Retrospective cohort study of patients with physical and cognitive challenges presenting for menstrual concerns at an Adolescent Gynecology Clinic between 2006 and 2011 compared with a previous published cohort (1998 to 2003).

Three hundred patients with developmental disabilities aged 7.3 to 18.5 years (mean 12.1 ± 1.6) were analyzed. Caregiver concerns included menstrual suppression, hygiene, caregiver burden, and menstrual symptoms. Ninety-five percent of patients had cognitive disabilities, 4.4% had only physical impairments. Thirty-two (31.7) percent of patients presented premenarchally. The most commonly selected initial method of suppression was extended or continuous oral contraceptive pill (OCP) (42.3%) followed by patch (20%), expectant management (14.9%), depot medroxyprogesterone acetate (DMPA) (11.6%), and levonorgestrel intrauterine system (LNG-IUS) (2.8%). Published data from 1998 to 2003 indicated a preference for DMPA in 59% and OCP in 17% of patients. The average number of methods to reach caregiver satisfaction was 1.5. Sixty-five percent of initial methods were continued. The most common reasons for discontinuation were breakthrough bleeding, decreased bone mineral density, or difficulties with patch adherence. Second-choice selections included OCP (42.5%), LNG-IUS inserted under general anesthesia (19.2%), DMPA (17.8%), and patch (13.7%).

Since identification of decreased bone mineral density with DMPA and emergence of new contraceptive options, use of extended OCP or patch has surpassed DMPA for menstrual suppression in our patient population. LNG-IUS is an accepted, successful second-line option in adolescents with developmental disabilities.