Juvenile SLE is a chronic disease characterized by flares and remissions, often with long periods of active disease requiring intensive treatment. At times, the disease or its complications can result in severe problems needing urgent and aggressive care. Juvenile SLE can certainly be life threatening, particularly if there is inadequate treatment or poor compliance with treatments.
The treatment of juvenile SLE should incorporate medical management with pharmacologic agents, and attention to general health issues such as diet, sun exposure, exercise, and participation in school, and peer activities. Education for the adolescent and family is a very important consideration. Optimal care for the adolescent with SLE should include the family and patient as an active member of the health care team, with a pediatric rheumatologist, clinical nurse specialist, psychologist, nutritionist, physiotherapist, and occupational therapist as part of the team. The health care providers involved with the adolescent should not only have expertise in the area of lupus treatment but should also have expertise and interest in the care of adolescents with chronic health conditions.
Compliance with a long-term and complicated medical program is a frequent difficulty in adolescents with SLE. Some adolescents with renal disease may not feel particularly ill. They may therefore have difficulty understanding the reason for taking medications or following an intensive treatment program. The medications that are the mainstay of treatment for SLE have side effects that adolescents find objectionable. For example, high-dose prednisone will result in weight gain, skin striae, and acne. Many adolescents will either refuse to take the medication once they have experienced these side effects, or not take the medication as prescribed to try to avoid the side effects. Finally, adolescents who have had SLE for many years may develop "treatment fatigue." They become tired of being ill, attending doctor appointments, and taking medications and simply decide to stop. Their adolescent developmental stage leads them to believe that nothing bad will happen to them. It is critical for health care providers for adolescents with SLE be aware of these potential issues, and to keep alert for signs of noncompliance with treatment, as this may have disastrous results for the patient. (For further discussion of adherence, see Chapter 5.)
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