Preparing for Puberty in Girls With Special Needs: A Cohort Study of Caregiver Concerns and Patient Outcomes.
STUDY OBJECTIVE
To characterize the patient population with cognitive or physical impairments that presents for anticipatory guidance of puberty, evaluate caregiver concerns with respect to puberty, and describe chosen management strategies and outcomes following menarche.


DESIGN
Retrospective cohort study SETTING: Academic tertiary care women and children's hospital PARTICIPANTS: Eligible female patients with special needs up to age 26 years presenting for anticipatory guidance from 2009 to 2018 MAIN OUTCOME MEASURES: Primary outcomes included characterization of patients presenting for anticipatory guidance and their reasons for menstrual management. Secondary outcomes were satisfaction with menstrual management and bleeding patterns.


RESULTS
A total of 61 patients presented for anticipatory guidance of puberty, on average 13.5 months prior to menarche. Compared to the overall adolescent population with special needs who presented for gynecologic care, patients who had autism spectrum disorder (ASD), were nonverbal, or had attention-deficit/hyperactivity disorder (ADD/ADHD) were more likely to present for a pre-menarchal visit to discuss anticipated pubertal development (P < .001, P = .009, and P = .04, respectively). More than half of families described potential behavioral changes as their main concern. The majority of post-menarchal patients (80%) desired hormonal management of menses, including 30% of patients who had placement of a levonorgestrel intrauterine device. In all, 96% of patients were satisfied with their final menstrual bleeding pattern; 50% achieved amenorrhea or light spotting.


CONCLUSIONS
This study describes the important role of pre-menarchal reproductive counseling for girls with disabilities. Anticipation of puberty causes great anxiety in families and patients, especially those with ASD, ADD/ADHD, and non-verbal status. Providers should consider initiating these conversations early in pubertal development.
['Fei|Y Frances|YF|', 'Ernst|Susan D|SD|', 'Dendrinos|Melina L|ML|', 'Quint|Elisabeth H|EH|']
D000293:Adolescent D000328:Adult D017028:Caregivers D002648:Child D003376:Counseling D002658:Developmental Disabilities D005260:Female D006176:Gynecology D006801:Humans D008572:Menarche D008598:Menstruation D012189:Retrospective Studies
Puberty Anticipatory guidance Menarche Disability Developmental delay Menstrual suppression