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Systemic%20lupus%20erythematosus%20(pediatric) Patient Education
Patient/Parent Education
- Patients should be provided with information, counseling and support
- Involve all the family members in counseling regarding the disease
- Family must have a thorough understanding of the disease, its potential severity and complications of the disease and treatment
- Patient must learn to cope and monitor the disease when he or she is at the right age
- He or she should be able to distinguish signs and symptoms that may precede a disease flare and consult with the physician immediately
- Educate all patients regarding possible complications from unplanned pregnancy, poor compliance, recreational drug use and infection
- Advise patients to join other SLE patients in support groups
- Patients must be advised to refrain from sunbathing, wear clothing with long sleeves and use umbrella or sunscreen lotion to prevent exacerbation of dermatologic symptoms
- Use sunscreen with at least a sun-protection factor (SPF) of 15-30 to prevent dermal or systemic disease flares upon exposure to ultraviolet light
- Patients must have appropriate diet to prevent obesity, osteoporosis and dyslipidemia
- Patients on corticosteroids should have a no-added-salt, low-fat and calcium-sufficient diet
- Supplementation with calcium and vitamin D is recommended
- Advise patients to seek medical help when they have fever
- Exposure to immunosuppressive drugs used in SLE may predispose patients to infection
- Encourage patients to maintain a normal lifestyle
- Regular exercise to maintain appropriate weight and bone density
- Advise patients that fatigue and stress are associated with disease flares
- Smoking cessation is recommended
- Immunization should be updated for all patients
- Patients should have appropriate immunizations (ie influenza, pneumococcal)
- Patients with SLE are often complement deficient and are at risk for encapsulated organisms
- Antibiotic prophylaxis for all dental, genitourinary and other invasive procedures for patients at high risk of infections (eg patients with valvular abnormalities, on immunosuppressive therapy)
- Patients should routinely undergo gynecologic assessments, dental care and ophthalmologic exam especially for patients taking corticosteroids and Hydroxychloroquine
- Psychological support may also be necessary
