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

被引:43
作者
Benito-Leon, Julian [1 ,2 ]
Rivera-Navarro, Jesus [3 ]
Luis Guerrero, Angel [4 ]
de las Heras, Virginia [5 ]
Balseiro, Jose [6 ]
Rodriguez, Elena [7 ]
Bello, Mireia [8 ]
Martinez-Martin, Pablo [9 ,10 ,11 ]
机构
[1] Univ Hosp Octubre 12, Dept Neurol, Madrid, Spain
[2] Ctr Invest Biomed Red Enfermedades Neurogenerat C, Madrid, Spain
[3] Univ Salamanca, Dept Social Sci, E-37008 Salamanca, Spain
[4] Univ Clin Hosp, Dept Neurol, Valladolid, Spain
[5] Univ Clin Hosp San Carlos, Dept Neurol, Madrid, Spain
[6] Getafe Univ Hosp, Dept Neurol, Madrid, Spain
[7] Hosp Severo Ochoa, Dept Neurol, Madrid, Spain
[8] Bayer Schering Pharma, Barcelona, Spain
[9] Reina Sofia Fdn, Alzheimer Ctr, Alzheimers Dis Res Unit, Madrid, Spain
[10] CIBERNED, Natl Ctr Epidemiol, Area Appl Epidemiol, Madrid, Spain
[11] Carlos III Inst Hlth, Madrid, Spain
基金
美国国家卫生研究院;
关键词
All demyelinating disease; Multiple sclerosis; Caregiver; All health services research; Outcome research; Quality of life; Questionnaires; PARKINSONS-DISEASE; HEALTH-STATUS; BURDEN; PEOPLE; GUIDELINES; COMPONENTS; STRAIN; SF-36;
D O I
10.1016/j.jclinepi.2010.08.003
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
100404 [儿少卫生与妇幼保健学];
摘要
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 1 (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. (C) 2011 Elsevier Inc. All rights reserved.
引用
收藏
页码:675 / 686
页数:12
相关论文
共 54 条
[1]
Aaronson N, 2002, QUAL LIFE RES, V11, P193
[2]
Akkus Y, 2010, DISABIL REHABIL
[3]
ALONSO J, 1995, MED CLIN-BARCELONA, V104, P771
[4]
Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study [J].
Alshubaili, Asmahan F. ;
Ohaeri, Jude U. ;
Awadalla, Abdel W. ;
Mabrouk, Asser A. .
BMC HEALTH SERVICES RESEARCH, 2008, 8 (1)
[5]
[Anonymous], 1952, Handbook of basic documents, V5th, P3
[6]
[Anonymous], PubMed
[7]
Quality of life among persons with multiple sclerosis and their caregivers [J].
Aronson, KJ .
NEUROLOGY, 1997, 48 (01) :74-80
[8]
Badia Llach X, 1999, QUALITY LIFE PARKINS, P17
[9]
Multiple sclerosis in Mostoles, central Spain [J].
Benito-Leon, J ;
Martin, E ;
Vela, L ;
Villar, ME ;
Felgueroso, B ;
Marrero, C ;
Guerrero, A ;
Ruiz-Galiana, J .
ACTA NEUROLOGICA SCANDINAVICA, 1998, 98 (04) :238-242
[10]
Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients [J].
Benito-León, J ;
Morales, JM ;
Rivera-Navarro, J .
EUROPEAN JOURNAL OF NEUROLOGY, 2002, 9 (05) :497-502