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.