Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study.
OBJECTIVE
To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden.


METHODS
A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis).


RESULTS
24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 +/- 14.1 years; and mean daily time devoted to care, 11.5 +/- 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden.


CONCLUSIONS
In contrast to previous studies, most Spanish MS-patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden.
Rivera-Navarro
Jesús
J
Veracruzana University, Minatitlán, Veracruz, México. jerivera@uv.mx
Morales-González
José Manuel
JM
Benito-León
Julián
J
D000203:Activities of Daily Living; D000328:Adult; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data*; D004651:Employment / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D016015:Logistic Models; D008137:Longitudinal Studies; D008297:Male; D009103:Multiple Sclerosis / Q000523:psychology / Q000534:rehabilitation*; D011788:Quality of Life; D017678:Sex Distribution; D012944:Social Support; D013030:Spain; D018454:Spouses / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013997:Time Factors