ABSTRACT
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.
Key Words
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Article info
Publication history
Published online: April 07, 2021
Accepted:
March 26,
2021
Received in revised form:
February 14,
2021
Received:
November 22,
2020
Footnotes
The authors have no conflicts of interest to disclose.
Funding/Support: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
This study was presented virtually at the University of Michigan Center for Disability Health and Wellness Disability Research Symposium on October 2, 2020.
Identification
Copyright
© 2021 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc. All rights reserved.
