The Caregiver Quality of Life Cystic Fibrosis (CQOLCF) Scale: Development and validation

The purpose of this study was to modify the Caregiver Quality of Life Index-Cancer Scale, develop it as the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) Scale, and validate it in the CF family caregiver population. Another purpose of this study was to create a disease-specific instrument that assessed the CF family caregivers perception of their quality of life.Three research questions guided this investigation into assessing the quality of life of CF family caregivers: (a) Is the CQOLCF a reliable instrument for assessing quality of life in CF family caregivers? (b) Is the CQOLCF a valid instrument for assessing quality of life in CF family caregivers? and (c) Is quality of life of CF family caregivers as measured by the CQOLCF total score related to patient disease severity? The population for the study consisted of a convenience sample of 100 CF family caregivers that cared for either established patients or new admissions during September 2000 to January 2001 at the Children's Hospital of Alabama.Analysis revealed the CQOLCF to be a reliable and valid instrument. Reliability, as measured by Cronbach's alpha was .909 (p < 0.01). Validity was determined by professional literature review, expert panel review, and correlation with the Medical Outcomes Short Form (SF-36) and Beck Depression Inventory. Correlations with the SF-36 mental health subscale scores and Mental Component Summary suggest a moderately high correlation with mental health issues and emotional distress. The moderately high correlation with the Beck Depression Inventory suggests the CQOLCF may also be measuring aspects of depression. Correlations with the SF-36 physical health subscale scores and Physical Component Summary suggest that the CQOLCF is not measuring physical health issues of the CF family caregivers. The CQOLCF was not expected to correlate highly with the physical components of the SF-36. Few items on the CQOLCF address physical health.The third research question assessed the relationship between the CF family caregiver quality of life CQOLCF total score and patient disease severity. Disease severity was measured by the patient's most recent Forced Expiratory Volume in 1 s score and number of days hospitalized during 1999--2000. Analysis determined that CF family caregiver's quality of life relates to patient hospitalization when adjusting for patient age. Quality of life in CF family caregivers decreases as patient disease severity increases. When controlling for age, disease severity, as measured by number of days the patient has been hospitalized in the last year, is significantly related to CF family caregiver quality of life.Of the 100 CF family caregivers responding to the CQOLCF, the total scores on the CQOLCF ranged from 0--103, with a mean total score of 41.16 ( SD = 21.65). Rank order exploratory analysis of item means demonstrated 3 quality of life issues to be most significant to this population: deterioration of their loved ones death of their loved ones and having a more positive outlook on life since their loved ones' diagnoses.