Maximize autonomy, avoid harm
Adolescence can be a period of turbulence and transition for both teens and their parents/caregivers. Teens with disabilities—physical, intellectual, or both—also encounter the challenges of adolescence. This period may cause stress to disabled patients and their caregivers, particularly when it comes to pubertal development, menstruation, and sexuality. Obstetricians and gynecologists will at some point in their careers care for patients with disabilities. The Americans with Disabilities Act defines a disability as a physical or mental impairment that substantially limits one or more major life activities.2 In 2012, 12.1% of the US population reported a disability. The disability rate is 5.5% among those aged 16 to 20 years with cognitive disabilities being the most common in that group, at 3.9%.3
Anticipatory guidance is an important part of caring for adolescents with disabilities. Caregivers may be worried about how menses will impact a patient and seek information prior to menarche. Studies have shown that most teens with disabilities and their families manage menses well without any interventions.4,5 A discussion about typical pubertal timing and duration is warranted. Most teens with disabilities will undergo normal puberty. Normalization of menses and sexuality as a part of life lays the foundation for a discussion with a patient and her caregivers so the clinician can assess the patient’s understanding of puberty, menstruation, sexuality, safety, and consent.3 Because it is difficult to predict how a patient and her caregivers will react to menses, premenarchal menstrual suppression is not recommended. In addition, by allowing puberty to progress naturally, an adolescent’s full stature can be achieved and the patency of her genital tract confirmed.
As with all patients, an adolescent with disabilities should receive comprehensive gynecologic care that respects confidentiality and the patient herself, while maximizing her autonomy and avoiding harm.3 Confidential reproductive healthcare is a right for all patients, regardless of their abilities. Most caregivers welcome developmentally appropriate medical guidance and understand the need to speak with a patient privately. The American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Pediatrics recommend confidential interviews starting at ages 12 to 14.6,7 Teens with disabilities have sexual thoughts, may be sexually active, and may express sexuality via masturbation.2 Assessment of the patient’s risk for sexual abuse is crucial. The degree to which patients with disabilities depend upon others for activities of daily living is dependent upon their particular medical condition(s). Many patients depend upon caregivers for private activities such as bathing, toileting, and dressing, thus making it more difficult for a patient to distinguish appropriate from inappropriate touch. Furthermore, praise for cooperation and following commands makes a patient vulnerable.7,8
ACOG Committee Opinion No. 668 (replacing Committee Opinion No. 448) provides guidance for clinicians caring for patients with disabilities who may request assistance with managing menses. When a clinician receives a request for menstrual management, manipulation, or suppression, it is important to assess the reason the request has been made. Did the request originate from the patient or the caregiver? Clear discussion of treatment goals ensures that the patient, caregiver, and provider are working together to achieve best outcomes. Some patients may desire lighter flow; others may prioritize cycle regularity; yet others may hope for menstrual suppression. In addition, some request contraception.
A thorough menstrual history will ensure that menses fall within normal parameters; reinforcing the idea of “menses as a vital sign” is valuable.9 While it is common for adolescents to have irregular menstrual cycles for the first 2–5 years after menarche,9 clinicians should evaluate for underlying etiologies of irregularity before initiating hormonal treatment or menstrual suppression. Evaluation is the same for all adolescents regardless of disabilities. As mentioned above, because disabled adolescents are at increased risk of sexual abuse and their sexuality often is downplayed, irregular bleeding secondary to sexually transmitted infections (STIs) may be under-recognized. STI screening should be performed when appropriate.
Indications for menstrual management or suppression include treatment of heavy periods or dysmenorrhea, hygiene concerns, and behavioral changes/distress related to menstrual blood.
If menstrual manipulation is warranted, after a discussion with the patient and her caregivers, the clinician should review the adolescent’s medical comorbidities to determine which treatment methods are applicable. The Centers for Disease Control and Prevention’s U.S. Medical Eligibility Criteria for Contraceptive Use provides evidence-based guidance related to contraception use with a wide array of medical conditions.10 Menstrual interventions should be tailored to each patient, and providers must discuss the advantages and disadvantages of each method. It is particularly important to clearly discuss that complete amenorrhea may be difficult to achieve.
Nonsteroidal anti-inflammatory drugs
Nonsteroidal anti-inflammatory drugs (NSAIDS) may be used to reduce ovulatory menstrual bleeding and reduce dysmenorrhea by reducing prostaglandin production. The principal action of NSAIDS is inhibition of cyclo-oxygenase. NSAIDS will not achieve amenorrhea but they are helpful for reducing menstrual flow and pain.
Estrogen-progestin pills, patch, or ring are options for patients with disabilities, barring any medical contraindications to estrogen. These methods can be used in a continuous or extended-cycle fashion. Complete amenorrhea may not be achieved, but unscheduled light bleeding typically is tolerated by patients, as long as they have been counseled that this may occur. All estrogen-progestin methods require active management by a patient or her caregiver. Some concern exists about estrogen-containing methods and immobility in regard to overall venous thromboembolism (VTE) risk. Providers, patients, and families must weigh the risk of heavy menstrual bleeding, severe dysmenorrhea, or pregnancy against the risk of a VTE.
Oral progestins are useful to reduce menstrual blood flow, and in some doses will achieve amenorrhea. Patients must consistently take the pill at the same time to reduce the likelihood of unscheduled bleeding.
Depot medroxyprogesterone acetate (DMPA) is useful for reducing bleeding and pain, and in some cases, will achieve amenorrhea. DMPA is given intramuscularly every 12 weeks. In patients using enzyme-inducing antiepileptic drugs, the dosing interval may need to be reduced to every 10 weeks. Unscheduled bleeding is common initially, but typically improves with continued use. Adolescents using DMPA may see a decrease in bone mineral density (BMD), but studies indicate that BMD recovery occurs after discontinuation. BMD testing is not recommended in adolescents.11 One area of concern is weight gain with DMPA use. Patients with limited mobility may depend on their own strength or the assistance of others for transfers and weight gain may make those maneuvers more difficult. Progestins do increase the seizure threshold and are helpful for patients with seizure disorders.12
The levonorgestrel intrauterine device (LNG-IUD) is a safe method and should be considered for adolescents with disabilities. Very few contraindications to IUD use exist, making the method ideal for patients with multiple comorbidities.
Progestin subdermal contraceptive implants may be used in this population, but the high incidence of unscheduled bleeding makes them somewhat less desirable. They do, however, reduce dysmenorrhea and provide highly effective contraception. Patient cooperation is required to ensure safe and proper subdermal placement.
Families may request hysterectomy as a means of definitive amenorrhea. However, it is not recommended unless other less-invasive options have been exhausted. Hysterectomy is irreversible and is major surgery with attendant morbidity/mortality risks. It will not protect the patient from sexual abuse or STIs.1 Disabled adolescents have the same rights as any women, and the benefits of surgical intervention must outweigh the risks.
While not the focus of this committee opinion, caregivers may sometimes request hysterectomy to accomplish permanent sterilization of a patient. ACOG Committee Opinion No. 371, “Sterilization of women, including those with mental disabilities,”13 provides guidance on ethical considerations surrounding sterilization. All sterilization requests should be evaluated on an individual basis and follow the principles of respect for autonomy, beneficence, and justice.
Endometrial ablation is not recommended for adolescents for 2 reasons: the rate of failure is higher in younger patients and it is not a sterilization procedure.
1. Menstrual manipulation for adolescents with physical and developmental disabilities. ACOG Committee Opinion No. 668. American College of Obstetricians and Gynecologists. Obstet Gynecol. 2016;128:e20-25.
2. Quint EH. Menstrual and reproductive issues in adolescents with physical and developmental disabilities. Obstet Gynecol. 2014;124:367-375.
3. Erickson W, Lee C, von Schrader S: 2012 Disability Status Report: United States. Ithaca, NY, Cornell University Employment and Disability Institute (EDI), 2014.
4. Hamilton A, Marshal MP, Sucatos GS, et al: Rett syndrome and menstruation. J Pediatr Adolesc Gynecol. 2012: 25:122.
5. Hamilton A, Marshal MP, Murray PJ: Autism spectrum disorders and menstruation. J Adolesc Health. 2011: 49:433.
6. American College of Obstetricians and Gynecologists: Guidelines for Adolescent Health Care, 2nd edition. 2012. http://www.acog.org/Resources-And-Publications/Guidelines-for-Adolescent....
7. American Academy of Pediatrics. Bright Futures. Available: brightfutures.aap.org
8. Quint EH. Adolescents with special needs: clinical challenges in reproductive health care. J Pediatr Adolesc Gynecol. 2016;29:2-6.
9. Menstruation in girls and adolescents: using the menstrual cycle as a vital sign. Committee Opinion No. 651. American College of Obstetricians and Gynecologists. Obstet Gynecol. 2015;126:e143-146.
10. Curtis KM et al. U.S. Medical eligibility criteria for contraceptive use, 2016. MMWR Recomm Rep. 2016 Jul 29;65(3):1-103.
11. Depot medroxyprogesterone acetate and bone effects. Committee Opinion No. 602. American College of Obstetricians and Gynecologists. Obstet Gynecol. 2014;123:1398-1402.
12. Foldvary-Schaefer N et al. Hormones and seizures. Cleve Clin J Med. 2004;71(suppl2):S11-18.
13. Sterilization of women, including those with mental disabilities. ACOG Committee Opinion No. 371. American College of Obstetricians and Gynecologists. Obstet Gynecol. 2007;110:217-220.