Growing Older with Cystic Fibrosis: Psychologic Adjustment of Patients More Than 16 Years Old

Abstract

The 79 female and 147 male patients constituting the population with cystic fibrosis (CF) aged 16 yr and older attending The Hospital for Sick Children were asked to complete the Cornell Medical Index (CMI) and Tennessee Self-Concept Scale (TSCS); 64 female (81%) and 112 male (76%) subjects participated. Analysis of CMI results showed 43% of female subjects to have moderate to severe emotional disturbance compared to 19% of male subjects. This female:male ratio for severity of emotional disturbance is found in ostensibly healthy groups, but the percentages of disturbance approach values for medical patient populations. The frequency of emotional disability is greater in those > 20 than in those 16-19 yr old. The TSCS results portray a generally normal self-concept except for scores of positive physical self and psychosis for patients aged .gtoreq. 20 yr; these scores approach psychiatric values, suggesting that some reality distortion facilitates emotional adjustment to adult life with CF. The TSCS and CMI results correlate significantly, indicating a connection between self-concept and emotional status. TSCS and CMI scores do not correlate with measures of disease severity except for correlations between lung function and physical self-concept in older male patients. Evidently, psychologic functioning is independent of the degree of physical impairment in older patients with CF, with the long-surviving male patients more realistically appraising the limitations their disease imposes and utilizing denial and minimization to a lesser degree. Demographic data on the clinic population reveal that most patients aged 16 yr and older cope with their intellectual, developmental and socioeconomic tasks commensurate with noral age expectations.