Cystic fibrosis and the pediatric caregiver: benefits and burdens of genetic technology.
Pediatric providers will be faced with questions about genetic disease more and more frequently as new technologies are developed for their diagnosis and treatment. With early genetic testing, improved treatments, and the potential for gene therapy, genetic diseases like cystic fibrosis, once thought to be fatal, are now considered chronic. Therefore, many such conditions will be seen not only in the PICU, but in ambulatory pediatric and adolescent settings. The life expectancy and psychosocial adjustment of children with chronic genetic diseases will depend not only on the severity of their disease but on the ongoing care and attention they receive. Because optimal care will require an awareness of the complex and variable moral and social issues raised at each stage of life, pediatric caregivers should be sensitized to issues in counseling families with genetic disease.
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D017281:Cost of Illness; D003550:Cystic Fibrosis / Q000235:genetics / Q000451:nursing; D004993:Ethics, Nursing; D005821:Genetic Techniques; D006801:Humans; D007223:Infant; D008297:Male; D010371:Pediatric Nursing