As much as possible, it is important for adolescents with SLE to be encouraged to remain a part of their usual school, family, and social setting. Completing education is important for these patients, whose disease will continue into adulthood. Involvement of appropriate vocational counseling during the high school years may be helpful in providing advice and directing towards available resources for post-secondary education or job training. The pediatric rheumatology team may need to become directly involved with the patient's school if the patient is ill enough to require time off school to attend appointments, requires hospital admissions, or modification of their school program. Young adults may need to take a reduced course load at college or university in order to to succeed.
To adolescents, the most important group of individuals is their friends (see Chapter 5). For adolescents with SLE, many issues relating to friends and peer experiences come up; for example, "Should I tell my friends I have SLE?" Adolescents may become depressed, either due to their disease or effects of treatment such as weight gain, etc. and this may lead to withdrawal from friends and further depression. Careful attention should be paid to these issues by the pediatric rheumatology team. Involving a social worker, psychologist, or nurse who can get to know the patient may be an important way to allow the young person to express their concerns in a private, nonjudgmental setting and to get good advice.
One of the important developmental tasks of adolescence is the development of sexual identity. In addition to the physical changes that occur during this time, the adolescent will often seek out information and may engage in experimenting and/or early sexual behaviors. For adolescents with SLE, their disease provides additional challenges to this developmental trajectory.
Adolescents with SLE may have delay in pubertal development (21); this may be the effect of active disease and/or medications. Slowed growth is also a significant side effect of corticosteroids, and this may be an added concern in adolescents, who are normally preoccupied with their body image. Slow pubertal development and growth may isolate an adolescent from peers and can be a significant area of distress.
Other concerns which should be considered in the care of adolescents with SLE include: irregular or absent menses resulting from active disease, the need for modification of contraceptive choices due to disease, risks of impaired fertility due to cyclophosphamide treatment, risks of unplanned pregnancy or pregnancy occurring during active disease to the mother and baby. The pediatric rheumatology team should begin to address these issues proactively.
Family-centered, comprehensive care should be the goal for adolescents with SLE, as with all pediatric rheumatology patients. Parents of an adolescent with a chronic illness such as SLE have enormous challenges in surmounting the usual tasks of parenting an adolescent as well as helping their teen learn independent health behaviors. The pediatric rheumatology team should work to support parents through this process as well as adolescents (see Chapter 14).
Was this article helpful?