Caregiver goals and satisfaction for menstrual suppression in adolescent females with developmental disabilities: A prospective cohort study.

BACKGROUND: Adolescents with developmental disabilities and their caregivers often seek menstrual management. Caregivers frequently serve as medical decision-makers, and little is known about caregiver goals for menstrual management and satisfaction over time. OBJECTIVE: Assess caregiver reasons for initiating menstrual management in adolescents with disabilities and satisfaction over 12 months. METHODS: Prospective cohort study of caregivers of adolescents with developmental disabilities seeking menstrual management at a pediatric and adolescent gynecology clinic. Data derive from caregiver surveys and adolescents' electronic medical records. RESULTS: Ninety-two caregiver-adolescent pairs enrolled. The mean age of adolescents was 14.4 (±2.6). The most common method started was levonorgestrel intrauterine device (LNG-IUD; 52, 56.5%), followed by oral norethindrone acetate (21, 22.8%). Caregivers cited hygiene concerns (84.8%), behavioral problems (52.2%), and heavy/excessive bleeding (48.9%) as reasons for initiating menstrual suppression. Caregivers who identified hygiene or heavy/excessive bleeding as the most important reason for management were more likely to select LNG-IUD (p = 0.009). Caregivers who cited behavioral/mood or seizure concerns as the most important reason were more likely to choose other methods (p < 0.05). At 12 months, caregiver satisfaction with all methods was high (66.2-86.9 on a 100-point scale). For every additional day of bleeding, satisfaction decreased by 3.7 points (95% CI: 2.3-5.0). CONCLUSIONS: Caregiver satisfaction with all methods is high; however, it negatively correlates with days of bleeding. Caregiver reasons for menstrual suppression influence the method chosen. Management may reflect both patient and caregiver priorities; research is needed to better understand shared decision-making models that promote reproductive autonomy in adolescents with a developmental disability.

Treatment of Acute Abnormal Uterine Bleeding in Adolescents: What Are Providers Doing in Various Specialties?

STUDY OBJECTIVE: The purpose of this study was to assess whether variability exists in the management of acute abnormal uterine bleeding (AUB) in adolescents between pediatric Emergency Department (ED) physicians, pediatric gynecologists, and adolescent medicine specialists. DESIGN: Retrospective chart review. SETTING: Tertiary care medical center ED. PARTICIPANTS, INTERVENTIONS, AND MAIN OUTCOME MEASURES: We included girls aged 9-22 years who presented from July 2008 to June 2014 with the complaint of acute AUB. Patients were identified using the International Classification of Diseases, ninth revision codes for heavy menstrual bleeding, AUB, and irregular menses. Exclusion criteria included pregnancy and current use of hormonal therapy. One hundred fifty patients were included. RESULTS: Among those evaluated, 61% (n = 92) were prescribed hormonal medication to stop their bleeding by providers from the ED, Adolescent Medicine, or Pediatric Gynecology. ED physicians prescribed mostly single-dose and multidose taper combined oral contraceptive pills (85%; n = 24), compared with Adolescent Medicine (54%, n = 7), and Gynecology (28%, n = 13). Pediatric gynecologists were more likely than ED physicians to treat patients with norethindrone acetate, either alone or in combination with a single dose combined oral contraceptive pill (61%, n = 33 vs 7%, n = 2; P < .001). CONCLUSION: Variations in treatment strategies for adolescents who present with acute AUB exist among pediatric specialties, which reflects a lack of standardized care for adolescents. Prospective evaluation of the shortest interval to cessation of bleeding, side effects, and patient satisfaction are valuable next steps.