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 o f adolescent health-related quality of life (HRQL) and between adolescent p ulmonary function (forced expiratory volume in 1 second as percent of predi cted) 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 C F 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 predicte d for the year of the study was also collected for each adolescent. Results. Adolescent pulmonary function was related to the perceived adolesc ent 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 an d 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 limitation s-physical (0.73), bodily pain (0.55), and physical functioning (0.70). Fat her perceptions of adolescent health were associated to adolescent pulmonar y function on general health (0.54), role/social limitations-physical (0.60 ), and physical functioning (0.64). Associations between adolescent and par ent perceptions of adolescent HRQL were also health scale- specific. Mother and child reports of adolescent HRQL were related on adolescent behavior p roblems (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 healt h (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 an d comprehensive, multidimensional measures of HRQL, in addition to pulmonar y function, when assessing health in adolescents with CF.