Adolescents With Cystic Fibrosis: Family Reports of Adolescent Health-Related Quality of Life and Forced Expiratory Volume in One Second

Abstract

ABSTRACT. 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 ( P ulmonary function is one of the traditional parameters of health status for patients with cystic fibrosis (CF). Forced expiratory volume in 1 second (FEV 1 ) is considered a reliable pulmonary function surrogate indicator for disease progression and projected survival. 1 As such, it has been widely used in clinical work and research on children, adolescents, and adults with CF. 2-4 Although pulmonary function tests, along with other physical parameters, are commonly used to monitor health status, biomedical measures by themselves do not provide the patient or clinician adequate information about the impact of disease on the daily functioning of adolescents with CF.CF may have considerable impact on a person's health-related quality of life (HRQL), defined as the "subjective and objective impact of dysfunction associated with an illness, injury, medical treatment, and health care policy." 5 Conceptualization of HRQL supports a subjective, multidimensional, and comprehensive model of health. This represents an expanded view of the traditional medical model that assesses health primarily through physical outcomes.There is growing interest in the inclusion of HRQL outcome measures to "evaluate differential changes in morbidity and the relative efficacy of medical interventions." 5 Although HRQL assessments may be useful to patients and professionals when making clinical decisions, evaluating efficacy of treatments, or when planning psychosocial interventions, HRQL has been neglected in clinical practice and research on children and adolescents with CF.Only a few studies have examined the relationship between biomedical factors and HRQL in children or adolescents with CF. 2,4,6,7 Some of these studies report a strong correlation between HRQL and disease severity, as measured by FEV 1 , 6,7 whereas others have found that no such relationship exists. 2,4 In addition, little is known about the relationships between different family members as sources of information concernin...

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

“…(26) However, in individuals under 18 years of age, no such correlation was observed. (28) In three studies conducted in the 2000s, (12,13,29) the correlation between QoL and FEV 1 in individuals with CF was assessed by the Child Health Questionnaire, with conflicting results. In two of the studies, (12,13) no such correlation was found.…”

“…However, the authors of the third study observed that adolescents and adults with abnormal FEV 1 reported a poor perception of their physical health. (29) In a recent study involving the use of the CFQ, adults with CF and with altered FEV 1 were found to have lower scores in the domains related to physical functioning and health, indicating that anxiety, depression, and pulmonary function correlate with self-reported QoL. (4,21) Most studies suggest that self-perceived health is directly related to age and to respiratory system impairment, becoming more evident in adolescents and adults with greater lung injury, (4,21,26) as observed in the present study.…”

Screening for cystic fibrosis-related diabetes: a systematic review.

“…Powers et al, 237 from Massachusetts, set out to administer the CHQ to 39 adolescent patients, their mothers and fathers. The response rates were 82% for patients and mothers but only 64% for fathers.…”

Adolescent Health-Related Quality of Life Following Liver and Kidney Transplantation

“…Both a child (CHQ-CF 87) and caregiver version (CHQ-PF 50) of the CHQ are available and have been tested in normative populations as well as children with a wide variety of chronic diseases (13,17,25,26). CHQ-CF 87 and CHQ-PF 50 scales include physical functioning, role/social limitations due to physical health, bodily pain, general health, role limitations due to emotional/behavior problems, behavior, mental health and self-esteem.…”

“…The adolescent's unique position in the transition zone between childhood and adulthood renders such reports from either parent or child even more susceptible to potential misinterpretation. Studies of adolescent patients with a broad range of chronic illnesses indicate that parents may report a greater impact of illness on the functioning of their children than the children themselves (13)(14)(15)(16)(17)(18). Similar patterns in the reporting of HRQOL may also be present in adolescent solid organ transplant recipients.…”