The treatment of adolescents with a chronic illness

see more p 325, 344, 347 Physicians must go beyond the medical model About 2 million adolescents (6% of persons aged 10-18 years) in the United States have a chronic health condition that results in limitation of daily activities or disability.1,2 The most common of these conditions are asthma and other chronic respiratory tract diseases, musculoskeletal disorders, and heart disease.3 Mental health problems, such as depression, are a leading cause of disability in this age group, as are speech, hearing, and visual impairments. Many of these teens face complex physical and emotional challenges during adolescence and in the difficult transition into adulthood.1 Adolescence includes a period of accelerated physical growth, the development of secondary sexual characteristics, and acceleration in cognitive and psychosocial development. As a result, the management of teens with a chronic illness must go beyond the strictly medical; it should include addressing issues such as development, family and social support, substance use, and reproductive health. The developmental processes involved in adolescence have a complex and bi-directional interaction with chronic illness such that a chronic disease can alter development and vice versa. For example, some chronic diseases, such as cystic fibrosis or diabetes mellitus, can impair pubertal development. On the other hand, puberty itself can affect the course of a chronic disease. For example, normal puberty is associated with insulin resistance; therefore, blood glucose control can be difficult during pubertal years in teens with diabetes.4,5 Family relationships and psychosocial issues can play a key role in the emotional health of teens with a chronic illness. In such teens, family connectedness has a greater influence on their well-being than the actual disease itself.6 The psychosocial factors associated with worse emotional health in these teens include male gender, psychiatric illness and/or criminality in a parent, and low socioeconomic status.7,8 Aspects of the disease that affect emotional well-being include its duration, the visibility of the disease, the way in which it limits mobility, and the patients' expected survival.9 Protective factors include a positive temperament, above-average intelligence, social competence, a supportive relationship with at least one parent, family closeness, and adequate rule setting by parents. Alcohol and recreational drug use can contribute to morbidity in teens with chronic illness and may interact adversely with prescribed medications. Although the rates of substance use are lower in teens who have a chronic illness than in those who do not, risky behaviors do occur.10,11 Health care providers often neglect the reproductive health of chronically ill teens; yet, many studies indicate that such teens are sexually active and interested in knowing about contraception, their fertility, and the genetics of their disease.10,12,13 In the United States, almost half of adolescents aged 15 through 17 years have been sexually active,14 and these rates of sexual activity are probably similar for chronically ill teens.10,12,13 The specific contraceptive needs of teens with chronic illness are well documented.15 Whereas some chronic conditions are associated with impaired fertility from the disease itself (eg, male adolescents with cystic fibrosis) or from the treatment (eg, survivors of certain childhood cancers),16 most chronic illnesses do not impair libido or fertility. Therefore, advice on effective contraception is extremely important. Although care must be taken in prescribing hormonal contraception to teenaged girls with a medical illness, most contraceptive methods are safer than pregnancy itself. Such teens should also be counseled about the necessity of carefully planning pregnancies to minimize teratogenicity from medications and treatments. All teens with chronic illness who are sexually active should be advised on how to protect themselves from sexually transmitted infections. A broad, holistic approach is therefore needed in caring for chronically ill teens. There are a number of ways in which primary care physicians can adopt such an approach. First, they can pay attention to the difficulties that teens face in adhering to medical therapies, and they should try to identify reasons for these difficulties, decrease the complexity of treatment regimens, enlist parental support, and refer to specialists and counselors as needed. Second, they can educate the teen and family about the nature and course of the disease and involve the family in providing support to the teen and in treatment decisions. Because teens are often familiar with using computer technology and the Internet, web-based educational materials and resources can be helpful. Third, a multidisciplinary team that provides continuity of care can help deal with the complex issues that teens face over time. Fourth, disease or peer support groups can be helpful. Finally, a smooth transition from child-centered to adult-oriented health care systems is a critical component of the care of older teens. Sadly, most adolescents with chronic disease make their way into the adult health system in an unplanned, uncoordinated manner. Further research is needed on the elements of a successful transitional program.