The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis

Abstract

Objective To develop and test the first specific instrument for assessing caregiver health-related quality of life (HRQOL) in multiple sclerosis (MS) (CAREQOL-MS). Study Design and Setting Questionnaire items were derived from a literature review and the views of patients, caregivers, and experts. Instrument was reduced after the analyses of caregivers' interviews and experts' opinions. CAREQOL-MS psychometric properties were assessed in 276 MS caregivers. Results The final version consisted of 24 items (four subscales) and was free of floor or ceiling effects. For subscales, the Cronbach's alpha coefficient ranged from 0.75 to 0.90. The item-total correlation was 0.62–0.74 for subscale I (physical burden/global health); 0.56–0.74 for subscale II (social impact); 0.52–0.62 for subscale III (emotional impact); and 0.58–0.65 for subscale IV (need of help/emotional reactions). The intraclass correlation coefficient (0.96 for the total score; 0.75–0.95 for subscales) suggested satisfactory reproducibility. Association was close between CAREQOL-MS subscales and the Zarit burden interview and moderate with short form 36 mental/physical components. CAREQOL-MS subscales scores significantly increased (worse HRQOL) with increasing caregivers' age and Expanded Disability Status Scale. The standard error of the mean ranged from 0.91 to 2.43 for subscales. Conclusions Our results provided initial evidence of the usefulness and satisfactory psychometric properties of the CAREQOL-MS.