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.