Dr. O'BrienCaregivers 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 be considered.
Dr. O’Brien, a lead author of the clinical report, is a former member of the AAP Committee on Adolescence.
