Menstrual management for teens with disabilities: review of options
Rebecca F.O’Brien, M.D., FAAP
AAP Clinical Report
Caregivers often worry about pubertal development in their daughters with physical
or intellectual disabilities. The pediatrician and the medical home can assist by
providing anticipatory guidance regarding emerging sexuality, physical changes of
puberty and the onset of menses.
A new clinical report from the AAP Committee on Adolescence and the North American
Society for Pediatric and Adolescent Gynecology provides guidance to pediatricians
as they help patients with disabilities and their families navigate the pubertal transition
and consider options for menstrual management. The report, Menstrual Management for Adolescent With Disabilities,http://dx.doi.org/10.1542/peds.2016-0295, will be published in the July issue of Pediatrics.
Premenarchal suppression of menses is not recommended for most teenagers with disabilities.
Expectant management allows for patients and families to determine if they can cope
with these changes, as suppression can cause premature closure of the epiphyses and
prevent attainment of the full height potential. If the cycles are creating difficulties,
the decision for menstrual suppression involves a discussion with the patient and
parents/guardians, clinical considerations such as anemia or dysmenorrhea, and social
context such as hygiene, risk of abuse or pregnancy.
Teenagers with physical disabilities are just as likely to be sexually active as their
peers and have a higher incidence of sexual abuse. Most states allow for consent and
confidential services around issues such as sexually transmitted infections, contraception
and pregnancy for teenagers; however, this is more complicated in the cognitively
impaired patient and may require discussion about legal guardianship or medical power
of attorney for families.
When reasons for suppression are not based on a clear medical condition and suppression
is requested due to inability to deal with menses or fear of abuse or pregnancy, the
patient’s circumstances and safety should be investigated. Health care providers can
assist families in addressing needs in schools and other settings.
Unscheduled bleeding may be more difficult than controlled withdrawal bleedings. It
can be especially difficult for teenagers who rely on others for hygiene assistance.
Hormonal options included estrogen- and progestin-containing combined oral contraceptives,
ring or patch, and the progesterone-only methods of progestin-only pill, depot medroxyprogesterone
acetate, implant, or levonorgestrel intrauterine device. Gonadotropin-releasing hormone
agonists generally are not recommended for long-term menstrual suppression due to
concerns of decreased bone density.
Surgical methods of endometrial ablation or hysterectomy have legal and ethical considerations
because most patients with intellectual disabilities cannot give their own consent.
Discussion of these methods and side effects are useful when providing anticipatory
guidance in this area. Referral to a gynecologist or ethics consultation also may
Dr. O’Brien, a lead author of the clinical report, is a former member of the AAP Committee