All young women deserve to have information about reproductive healthcare, including those with chronic medical conditions (CMC). For a number of reasons, the reproductive health needs of this population are often overlooked.
Pediatric primary care and subspecialty providers often feel uninformed and ill-equipped to manage issues, such as menstrual disorders, contraception, and routine gynecologic care in their practices. Finding gynecologists comfortable seeing adolescents, especially younger adolescents, to provide anticipatory guidance about reproductive health issues can also be a challenge.
Families and providers may assume the reproductive needs and desires of young people with CMC differ from youth without medical problems. However, the reproductive concerns of youth with CMC are similar. During puberty, all youth ask themselves: “What’s happening to me?” and “Am I normal?” When questions arise, they also wonder to whom they can turn to obtain accurate information without judgment.
Special considerations for some conditions
Receiving timely and comprehensive reproductive healthcare is important, especially as certain underlying medical conditions can make menses unusually heavy, irregular, or painful. For example, patients on anticoagulants or those with bleeding disorders can have significant blood loss during menses. This may be easily managed with commonly prescribed medications, like high-dose nonsteroidal anti-inflammatory drugs (NSAIDS), hormonal contraceptives, or anti-fibrinolytic agents. Some patients may have a CMC that precludes using these medications. Consultation with an adolescent medicine physician or pediatric gynecologist can help.
Patients with intellectual or developmental delays may face unique reproductive health challenges. Behavioral and hygienic issues may arise or be exacerbated during menses, but are amenable to low-risk interventions, like pre-menstrual NSAIDS. Questions regarding sterilization, menstrual suppression, sexual assault prevention, and pregnancy prevention are common among parental caregivers and should be assessed and addressed.
Some providers and caregivers assume young people with CMC are less likely to be sexually active than those without CMC. This may be true for youth with severely debilitating conditions, but evidence shows the age of sexual initiation is otherwise similar among young people with and without CMC. What differs is that young women with CMC are at higher risk for unintended pregnancies due to lower rates of contraceptive use. Routinely obtaining a confidential sexual history and providing or referring patients for contraceptive counseling is essential.
Some conditions and medications make pregnancy risky
Ideally, regular conversations about these topics start well before a patient is sexually active. Many young people with CMC will want to know their fertility potential, or if their condition is heritable. They deserve to have such information before planning families of their own. Some patients may also have conditions that make pregnancy dangerous or high-risk. For example, patients with certain congenital heart conditions can be hemodynamically compromised during pregnancy. Additionally, some may take medications that are contraindicated in pregnancy or increase the risk of birth defects. In these last two groups, it will be extremely important for pregnancies to be planned and for patients to be engaged in medical care early and often.
There is a fair amount of confusion about routine gynecologic care for young women in general. It can be even more confusing for those with a CMC. The American College of Gynecology recommends an initial reproductive health visit with a gynecologist occur between age 13 to 15 years. The "Recommendations for an initial reproductive health visit (IRHV) and subsequent reproductive visits" section below outlines the reproductive healthcare that should be provided at this visit. The earlier providers start discussing and normalizing reproductive healthcare with their patients, the more likely patients are to engage in a timely and optimal manner.
At Children’s Hospital of Philadelphia (CHOP), the Division of Adolescent Medicine is a great resource for comprehensive reproductive care for our adolescent and young adult patients. The division is staffed with experienced nurses, nurse practitioners, pediatricians, internists, and gynecologists with expertise in promoting the sexual and reproductive health of young people, including those with CMC. In addition to consultative menstrual and reproductive health services at our Adolescent Specialty Care Clinic, we also offer free and comprehensive family planning services in West Philadelphia, including an IRHV, for local teens.
Quality improvement initiatives are under way at Adolescent Medicine to facilitate delivery of reproductive services to youth with CMC. An ongoing collaboration with the CHOP Comprehensive Sickle Cell Disease Center is exploring ways to identify CHOP patients who are taking teratogenic medications and to connect these patients with comprehensive reproductive healthcare at an early age.
Reproductive healthcare is an important part of care services for young people in the CHOP network. Coordination of care between specialists caring for a patient’s CMC and reproductive health specialists can ensure the best health outcomes.
Recommendations for an initial reproductive health visit (IRHV) and subsequent reproductive visits
Initial visit between 13 – 15 years of age
- A thorough medical and reproductive health history are obtained.
- Screening for reproductive health conditions is performed, including menstrual issues, sexual history, relationship violence, and need for contraception and sexually transmitted infection testing.
- Age-appropriate immunizations are offered
- Cervical screening (previously called a Pap test) for the HPV virus should begin at age 21, or sooner for immune-compromised patients.
- A routine, comprehensive physical exam is recommended; a pelvic and breast exam is not advised, unless medically indicated based on patient complaints.
- Future care is outlined.
- Whether subsequent visits are performed by a primary care provider (PCP) or reproductive health provider will depend upon the types of issues being managed and the comfort of the PCP.
- The frequency of subsequent visits will be based on the assessments at the initial visit.
- For example, the HPV vaccine is a 2-shot series offered 6 months apart for those under age 15; a 3-shot series is recommended for those ages > 15 years and is administered at 0, 2 and 6 months.
- For example, in general, cervical screening is recommended every 3 years following a normal result or at least annually after an abnormal finding in young women ages 21 to 30.
Contributed by: Linda A. Hawkins, PhD, MSEd, LPC, Nadia L. Dowshen, MD