The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis.
OBJECTIVE
To develop and test the first specific instrument for assessing caregiver health-related quality of life (HRQOL) in multiple sclerosis (MS) (CAREQOL-MS).


METHODS
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 (five 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); subscale V (emotional reactions) had only two items. 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 measurement 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.
Department of Neurology, University Hospital 12 de Octubre, Madrid, Spain. jbenitol@meditex.es
Julián
J
Benito-León
Jesús
J
Rivera-Navarro
Angel Luis
AL
Guerrero
Virginia
V
de Las Heras
José
J
Balseiro
Elena
E
Rodríguez
Mireia
M
Belló
Pablo
P
Martínez-Martín
D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000451:nursing*; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology*; D011795:Surveys and Questionnaires / Q000145:classification / Q000592:standards*; D055815:Young Adult