Adolescents with cystic fibrosis: family reports of adolescent health-related quality of life and forced expiratory volume in one second.

PURPOSE To assess the relationship between adolescent and parent reports of adolescent health-related quality of life (HRQL) and between adolescent pulmonary function (forced expiratory volume in 1 second as percent of predicted) and reporter perceptions of adolescent health. METHODS Twenty-four adolescents with cystic fibrosis (CF), their mothers, and their fathers completed the Child Health Questionnaire during routine CF clinic visits at 2 urban hospitals. Patients were between the ages of 11 and 18 years (mean age: 14.2 years) and were predominantly male (75%). The best measure of forced expiratory volume in 1 second as percent of predicted for the year of the study was also collected for each adolescent. RESULTS Adolescent pulmonary function was related to the perceived adolescent physical health scales. It was not, however, associated to perceptions of adolescent emotional, social, or behavioral HRQL by any of the 3 family reporters. Associations were found between adolescent pulmonary function and self-reports of general health (0.73), role/social limitations-physical (0.47), and bodily pain (0.42). Adolescent pulmonary function was related to mother reports of adolescent general health (0.73), role/social limitations-physical (0.73), bodily pain (0.55), and physical functioning (0.70). Father perceptions of adolescent health were associated to adolescent pulmonary function on general health (0.54), role/social limitations-physical (0.60), and physical functioning (0.64). Associations between adolescent and parent perceptions of adolescent HRQL were also health scale-specific. Mother and child reports of adolescent HRQL were related on adolescent behavior problems (0.71) and role/social limitations attributable to behavior (0.48), role/social limitations attributable to physical (0.62), bodily pain (0.69), physical functioning (0.69), family activities (0.45), and general health (0.66). Associations were found between father and adolescent reports on perceived adolescent behavior problems (0.66); self-esteem (0.65); and role/social limitations attributable to physical (0.49), general health (0.61), and perceived mental health (0.48). CONCLUSIONS Results demonstrate the need to include multiple informants and comprehensive, multidimensional measures of HRQL, in addition to pulmonary function, when assessing health in adolescents with CF.