Teens with chronic illnesses need better reproductive guidance

Editor's Note: The Children’s Health Matters blog is a space dedicated to sharing important new research, policy ideas, clinical findings and journalism on child health and development. It’s part of our effort to spur a conversation online and off that offers a rich and varied set of perspectives. As part of that mission, this blog features a periodic column with insights offered by two of Children’s Hospital Los Angeles’ leading community-based research teams.

The first of the two groups is made up of community-based researchers who are tackling pediatric health challenges stemming from obesity and diabetes. Our other group of Children’s Hospital L.A. contributors focuses on severely ill children who are aging out of pediatric care and the services and benefits that formerly supported them. This post is from Ellen Iverson, director of transition research at CHLA's Division of Adolsescent Medicine.

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The 51 percent decline in U.S. teen pregnancy rates since 1990 is something public health specialists should be trumpeting. Wider access to reproductive health education and contraception help explain these welcome trends. As a result, thousands more teens have options they would not have had as young adults raising children. The birth rate decline demonstrates the power of paying attention to the needs of teens and giving them the information and tools to make informed decisions about their reproductive futures.

Less noticed, however, are the unique challenges facing adolescents and young adults (AYA) living with special health care needs. Approximately 12 percent of AYA in the United States are living with a health condition that requires ongoing treatment and management. Medical advances have extended the life span of many young people living with conditions. Until recently, many such patients wouldn’t have been expected to live past the age of 20. Today, most of these young people live well into adulthood.

As young adults with serious chronic conditions live longer, they’re confronting decisions their health care providers aren’t necessarily thinking about. Many are sexually active and some are actively thinking about having children of their own. Too often, neither providers nor parents are having conversations with these teens about contraception choices, the impact of their condition or medication on fertility or pregnancy or how to plan for their reproductive future. And that missing guidance can put these teens’ health in jeopardy and unnecessarily limit their future.

Entering adulthood can be complicated for anyone. But unlike their healthy peers, young adults living with chronic illnesses must keep up with a range of treatment and care regimes to stay well, including frequent visits to specialists who have provided their care throughout their childhood. Few of us can forget the often painful journey navigating adolescence. Those with special health care needs must deal with their condition even as they also deal with normal adolescent challenges – such as exploring social and sexual identities and thinking about their reproductive futures.

Living with chronic disease poses additional challenges. That can mean changes in physical appearance, compromised reproductive capacity, more dependence on parents, social isolation due to long absences from school and peers, fears of rejection, premature confrontation with mortality, and anxiety and depression.

These challenges can have a profound impact on social and sexual comfort, self-confidence, and sense of future. But in spite of these differences, these young people are at least as sexually active as their healthy peers. Some studies suggest they are more likely to take greater sexual risks and have higher rates of unplanned pregnancy.

But too often, the adults in these young people’s lives are not initiating serious conversations about what kind of reproductive future they want, and how their condition might shape those possibilities. Do they want to have children? Are they concerned about the impact of their condition on fertility, pregnancy and child rearing?

A small study conducted with 102 patients (15-21 years) with rheumatologic or renal disease at Children’s Hospital Los Angeles provides some insight into this group’s aspirations and concerns. Over two-thirds (68 percent) of these patients reported they definitely wanted to have children, yet 65 percent were concerned that their medication would interfere with having children or did not know how their medication would affect having children. Not surprisingly, those who planned on having children were significantly more likely to be worried about having children. Most surprisingly, 56 percent said that they had not had a conversation with their doctor about having children or the impact of their condition on fertility and childbearing.

Here’s the rub. While most healthy adolescents infrequently use health care services, AYA with chronic illnesses interact with the specialist teams regularly – often quarterly – to monitor and manage their disease. For many patients, these specialists play the role of primary care providers as well. Perhaps pediatric specialists regard sexual and reproductive health care outside their purview, even though sexual and reproductive health is fundamental to healthy development and fundamental to their care as managing their chronic condition. Many of their patients are considering or already having sex and will be thinking about fertility, pregnancy, and child-rearing. The fact remains that certain chronic conditions and the medications used to manage disease can compromise fertility and pregnancy, and so care must be taken in selecting safe and effective contraception. Some technologies can create disease complications and, in some cases, even be life-threatening.

Partnerships with adolescent primary care providers can lend support to specialists who might otherwise be uncomfortable managing the sexual and reproductive health needs of their young patients. Providers must carve out the time to understand and address the natural worries of these patients as they enter adolescence. They need guidance, information and support to ensure healthy sexual development and informed reproductive decision-making.

The American Academy of Pediatrics got it right in 2002 when it laid out guidelines to support youth with special health care needs as they enter adulthood:

The goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.

Unplanned pregnancy unnecessarily limits the potential of these young adults to live fulfilling and productive adult lives. We can do better when it comes to getting them the care and guidance they need.

Photo by Haleyface via Flickr.