Transition programs prepare adolescent patients for their transfer from pediatric to adult healthcare. Primary care physicians must incorporate sexual health self-management into transition planning for adolescents and young adults, but most especially for those with chronic illness or developmental disabilities.
Long-term health outcomes for children with chronic health conditions are improving. Many children who previously may not have survived past adolescence are now reaching adulthood, and research suggests that over 90% of children with special healthcare needs are living past the age of 20 years.1 As a result, there has been a movement to develop transition programs to prepare youth for the transfer from pediatric to adult care.
Transition is a process focused on educating patients and encouraging self-management. In contrast, transfer refers to the one-time event marking the end of pediatric care and onset of adult care.2 The difference between these concepts is important. Transfer of care is just one part of the overall transition process, which continues within the adult system as adolescents improve their independent self-management skills.
There is a general need for more attention to both medical and nonmedical issues during transition planning, despite guidelines that provide detailed and practice-level recommendations for supporting healthcare transition.3,4 Transition programs are often comprehensive and emphasize the promotion of health-related knowledge, self-management skills, educational and vocational issues, and self-advocacy as the pediatric patient prepares for transfer to the adult healthcare system. Yet, very few transition programs for adolescents with chronic health conditions or developmental disabilities include information on reproductive and sexual health. In a study of young adult women aged 16 to 23 years with type I diabetes, 34% reported they knew “nothing” or were misinformed about diabetes and pregnancy; 65% said they knew nothing about preconception counseling; and 63% said they knew nothing about diabetes and birth control.5
When primary care physicians (PCPs) involved in the transition were surveyed, all agreed that reproductive and sexual health is one of the most important issues to discuss with adolescents with chronic health conditions, but many did not feel equipped to effectively educate their adolescent patients.6 In fact, in a recently published study of communications between physicians and adolescents, approximately one-third of adolescents had annual health maintenance exams without any mention of sexual issues. When discussion about reproductive health and sexuality arose, the conversations were brief.7 Because there are medical and psychosocial implications for a healthy adult life, it is vital that the topic of reproductive and sexual health be routinely incorporated into transition planning for all adolescents and young adults.
Nationally, there are large gaps in young adults’ knowledge of contraception regardless of whether or not they have chronic diseases.8 Despite this fact, matters of sexual health, including contraception and sexually transmitted diseases (STDs), were discussed during only 54% of adolescent family medicine visits, according to physician-reported data.9 Time and personnel constraints may prevent these topics from being addressed in routine clinic visits. Indeed, PCPs report not having enough time in clinic visits to address all risk behaviors thoroughly.10
Without protocols for reproductive and sexual health education, communication gaps can develop between providers and adolescents with chronic illnesses.11 Various organizations, including the American Medical Association and the American Academy of Pediatrics, have developed guidelines for preventive services for adolescents, which include screening and anticipatory guidance related to responsible sexual behaviors and reproductive health.12,13 Incorporating reproductive and sexual health topics into routine adolescent care may facilitate the identification of those patients who may be at higher risk.
Reproductive and sexual health may be omitted from transition programming because transition is often focused on disease-specific issues such as adherence to medical regimens or medical stability.14 Additionally, the professionals coordinating transition are often pediatric providers who may not consider that their pediatric patients are engaging in “adult” behaviors and may not recognize the changing needs of their patients as they enter adolescence.15
Most adolescents do not feel comfortable raising questions about sex with their providers without being prompted to so. In one study, only 3% of adolescents independently introduced topics of sexual behavior, STDs, or birth control with their physicians.16 Within pediatric subspecialty clinics, concerns adolescents may have about their bodies or sexuality may be overshadowed by their chronic health conditions.14 Yet, to meet the basic transition goal of discussing future adult healthcare needs with patients, reproductive and sexual health must be a necessary component of transition both within primary care and subspecialty pediatrics.2
Most adolescents and young adults begin sexual activity and contraception use before moving to adult care. Thus it is critical to include reproductive and sexual health care in transition planning. In 2011, the national Youth Risk Behavior Survey reported that 47.4% of adolescents in grades 9 to 12 had sexual intercourse; 63.1% of 12th graders had been sexually active; and 6.2% of adolescents had sex before the age of 13 years.17 Among this group of adolescents, 15.3% had sex with more than 4 partners and 12.9% of those sexually active adolescents used no method to prevent pregnancy. Evidence suggests that adolescents with chronic health conditions are engaging in sexual activities at similar or higher rates than those of their healthy peers.14,18
Teaching adolescents about the implications of their chronic health conditions on their reproductive and sexual health will allow them to be better communicators in the future. Young adults must confidently communicate health information with their PCPs and adult specialty providers. In addition, it is important that adolescents be able to speak knowledgeably about medications, medical history, and a potentially high-risk pregnancy with future partners.
Adolescents with chronic illnesses want more information about reproductive health services.19 However, they have limited access to reliable information outside the clinical setting. For example, abstinence-only, school-based programs have been shown to be associated with higher rates of teenaged pregnancy and sexually transmitted infections (STIs), suggesting that adolescents are not receiving adequate education regarding sexual and reproductive health and decision making.20 In addition, school-based sexual health programs likely do not address issues related to reproductive health and sexuality in the context of a chronic medical condition.20,21
Perhaps, given the lack of comprehensive sex education, adolescents and young adults frequently rely on the Internet for health information.22,23 In fact, young adults report consulting the Internet about sexual health questions more often than asking their physicians or relatives.23 It is often difficult, however, to find information online about sexual health specific to an adolescent’s chronic illness. Additionally, adolescents and young adults rarely verify that the information found on such websites is up-to-date or reliable. By incorporating reproductive and sexual health information into routine clinical care and transition programming, providers can present adolescents with reliable information, including trusted websites, to increase their knowledge and improve their health outcomes.22,23
Reproductive and sexual health is an important aspect of transition across chronic illnesses and conditions, such as diabetes, sickle cell disease, rheumatologic disease, developmental delay, and transplant.24-27 To illustrate this topic, we will focus on our population of pediatric transplant recipients. Pediatric transplant recipients represent patients with chronic health conditions who are now transitioning to adult care because of increased survival rates.27 Little is known about long-term, posttransplant outcomes in reproductive health. However, serious medical complications can arise from unsafe sexual behaviors in solid organ transplant recipients, including increased risks of STDs from immunosuppressant medications and potential graft loss from unplanned pregnancies.28
Careful monitoring and screening for nonfertility-related sexual health concerns are needed among transplant recipients. Solid organ transplant recipients have an increased risk of cervical cancers and an increased risk for STDs while taking immunosuppressants.28 The complications from such infections are a significant cause of morbidity in transplant recipients.15 Furthermore, there are additional issues to consider when deciding on the best method of contraception for transplant recipients. For example, the use of combined oral contraception may be associated with increased complications among patients with liver disease, whereas immunosuppressant use may interact with hormonal contraception and could interfere with its effectiveness.15,29,30
Nevertheless, the use of contraception is an important topic to discuss with pediatric transplant recipients who do not wish to become pregnant, particularly because adolescents with chronic illnesses have high rates of unintended pregnancies.14,31 Many transplant recipients underestimate their fertility, potentially because of their underlying disease, their medication regimens, or delayed menarche.15 Because adolescent recipients often report feeling “normal” after their transplant, they may not realize the risks associated with becoming pregnant posttransplant.32 Adolescent transplant recipients should be provided with education related to the risks of an unintended pregnancy, including potential health complications for the transplant recipient and the baby. Still, it is possible for transplant recipients to have healthy pregnancies when graft function and medications are monitored carefully.33,34 Thus, the risks of sexual activities and the promotion of safe sexual practices should be discussed with recipients during adolescence as patients prepare to transition to adult healthcare.
Primary care physicians should provide a foundation of reproductive and sexual health knowledge to all adolescents and young adults, including those with developmental delay and chronic health conditions, at the time of annual well-care visits.13,35 Subspecialists should complement this education with condition-specific information about the implications of chronic illness and treatment on reproductive and sexual health, including contraception, STIs, pregnancy, and future fertility. This may require providers to increase their knowledge about the interactions between condition-related and contraceptive medications and other related medical concerns to increase their comfort with communicating these topics to adolescents and parents.36
Providers should begin speaking early with patients and their parents about beginning private patient-provider visits during adolescence because individual communication with the adolescent will promote better discussions of reproductive and sexual health.37 For example, preconception counseling in young women (Reproductive-health Education and Awareness of Diabetes in Youth [READY] for Girls) was associated with increased intention to discuss reproductive healthcare needs with their providers.38 Table 1 outlines suggested discussion topics and practice points for pediatric providers.8,11,31,39
Teenagers are more likely to address related concerns when their parents are not present. Thus, it is recommended that adolescents have “protected time” to spend in confidential conversation with their pediatricians.18 In addition to supporting private conversations with the adolescent patient, pediatricians should provide parents of adolescents with chronic health conditions age-appropriate information about the implications for their teenager’s reproductive and sexual health to help facilitate communication between parent and adolescent.40 There is certainly a challenge in engaging parents while maintaining confidentiality in communications between adolescents and providers, yet parental involvement may ultimately reduce high-risk behaviors, including those pertaining to sexual activity.10 In addition, including parents in the transition process is important, and doing so will allow parents to help promote independence in their adolescent children.41
In the interest of continuity and collaboration, specialty providers should communicate information regarding medication changes, contraception use, or high-risk behaviors to the patient’s PCP. Avoiding unintended pregnancy among adolescents with chronic illness is critical for promoting optimal long-term health, and providers should assist adolescents with chronic health conditions in identifying the contraceptive methods that will work best for them (Table 2).24-26,42,43 In a survey of practitioners who care for children with chronic illnesses, pediatric subspecialists and pediatric generalists agreed that there is not enough communication between them.44 Most importantly, physicians should communicate directly with each other, rather than communicating through their patients or through the parents of their patients.
Creating accessible information for different age groups and cognitive abilities is recommended for improving reproductive and sexual health education during transition for adolescents with chronic health conditions.41 Table 3 presents examples of education-based programs that can be adapted for in-clinic use.31,32,45-55 Information should be easily accessible to allow patients to consult materials if they have questions outside their clinic visits or if they feel uncomfortable approaching their providers.
Adolescents with chronic health conditions are transitioning into adulthood and the adult healthcare system at increased rates. Despite existing guidelines for adolescent preventive healthcare, reproductive and sexual healthcare needs are commonly overlooked, particularly among adolescents with chronic illness. There are often high risks associated with chronic health conditions, and serious medical complications can arise from unsafe sexual behaviors. It is vital to include condition-specific reproductive and sexual health education throughout the transition process because many adolescents will begin sexual activity or contraception use before moving to adult care. Future research should evaluate the most effective strategies to implement reproductive and sexual health programming among adolescents and young adults living with chronic illness.
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Ms Gleit, a graduate of the University of Michigan, was an undergraduate student researcher, Department of Pediatrics, University of Michigan Medical School, Ann Arbor. Dr Freed is director, Division of General Pediatrics; professor, Pediatrics and Health Management and Policy; and director, Child Health Evaluation and Research (CHEAR) Unit, University of Michigan Health Systems, Ann Arbor, Michigan. He also is an editorial advisory board member for Contemporary Pediatrics. Dr Fredericks is associate professor of pediatrics, Department of Pediatrics and Communicable Diseases, and chief, Section of Pediatric Psychology, Division of Child Behavioral Health, CHEAR Unit, University of Michigan Medical School and C.S. Mott Children’s Hospital, Ann Arbor. The authors have nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.