Self-image of adolescents with cystic fibrosis

Cystic fibrosis (CF) is a lethal genetic disease, yet improved care has extended the mean age of survival into the young adult years. Many of the surviving adolescents have respiratory and digestive problems which delay growth and sexual development. It has been suggested that the specter of fatal disease interferes with adjustment to adolescence. We administered the Offer Self-Image Questionnaire to three groups with mean height less than the fifth percentile: CF males aged 12–19 (n=16); CF females aged 12–19 (n=8); and otherwise healthy males with short stature and/or delayed puberty aged 13–19 (n=34). The values obtained were compared to published normative data for a large number of normal adolescents and a smaller number of adolescents actively undergoing treatment for emotional disorders. CF males showed an abnormal pattern of adjustment that could be considered comparable to disturbed males and to growth-delayed and sexually delayed males. The CF female group was concordant with the normal population, rather than with the emotionally disturbed population. Thus CF and pubertally delayed males have a self-perception of maladjustment to the psychologic problems of adolescence. This suggests that adjustment problems of the CF male may be related to growth retardation and pubertal delay, the social stigma of which may be more easily disguised in the female. This is important in health care, since recent evidence suggests that exemplary attention to medical compliance and nutrition may ameliorate some of the growth lag both in pubertal delay and CF.Postdoctoral medical research fellow in allergy, immunology, and respiratory disease at Children's Hospital at Stanford. Received his M.D. from the University of Southern California and pediatric training at Stanford University Hospital. Main research interests are clinical nutrition and behavioral intervention in adolescents with chronic disease.Received his M.D. from Stanford University and pediatric training at Stanford University Hospital. Main research interests are growth disorders and adolescent development.Studied psychology at Dartmouth College and Oxford University before coming to Stanford University, where he is currently completing his Ph.D. in social psychology. Main research interests are the social determinants of motivation.Chief of the Allergy and Pulmonary Disease Service at Children's Hospital at Stanford and Assistant Professor of Pediatrics at Stanford University. Received his M.D. from University of Iowa; pediatric training at Yale-New Haven Hospital and Stanford University Hospital; and allergy, immunology, and respiratory postdoctoral training at Stanford University Hospital. Main research interest is cystic fibrosis.     

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