C R Sánchez-López1, L Perestelo-Pérez2, A Escobar3, J López-Bastida4, P Serrano-Aguilar5. 1. Facultad de Psicología, Universidad de La Laguna, Tenerife, Santa Cruz de Tenerife, España. 2. Servicio de Evaluación del Servicio Canario de la Salud, Tenerife, Santa Cruz de Tenerife, España; Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Tenerife, Santa Cruz de Tenerife, España; Centro de Investigaciones Biomédicas de Canarias (CIBICAN), Tenerife, Santa Cruz de Tenerife, España. Electronic address: lperperr@gobiernodecanarias.org. 3. Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Tenerife, Santa Cruz de Tenerife, España; Unidad de Investigación, Hospital de Basurto, Bilbao, Vizcaya, España. 4. Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Tenerife, Santa Cruz de Tenerife, España; Universidad de Castilla La Mancha, Talavera de la Reina, Toledo, España. 5. Servicio de Evaluación del Servicio Canario de la Salud, Tenerife, Santa Cruz de Tenerife, España; Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Tenerife, Santa Cruz de Tenerife, España; Centro de Investigaciones Biomédicas de Canarias (CIBICAN), Tenerife, Santa Cruz de Tenerife, España.
Abstract
INTRODUCTION: The progressive deterioration of patients with spinocerebellar ataxia (SCA) has a major impact on their health-related quality of life (HRQOL). This study evaluates HRQOL in a sample of patients diagnosed with SCA and aims to estimate the predictive ability of a set of sociodemographic variables for the different dimensions of the General Health Questionnaire. METHODS: A total of 80 patients diagnosed with SCA were assessed using a sociodemographic questionnaire and the SF-36 General Health Questionnaire. The sociodemographic variables studied were sex, age, presence of a carer, employment status, and time elapsed from diagnosis of the disease. RESULTS: The 8 subscales of the SF-36 show positive and significant correlations to one another. Mean scores obtained on each SF-36 subscale differ between women and men, although this difference is significant only on the general health subscale, with men scoring higher than women. We found significant age differences on the vitality and social function subscales, with higher scores among younger patients (< 34 years). The variable 'presence of a carer' accounts for most of the total variance of the questionnaire. CONCLUSIONS: The SF-36 is a valid and useful instrument for evaluating HRQOL in patients diagnosed with SCA. Presence of a carer seems to be a determinant of self-perceived quality of life in these patients.
INTRODUCTION: The progressive deterioration of patients with spinocerebellar ataxia (SCA) has a major impact on their health-related quality of life (HRQOL). This study evaluates HRQOL in a sample of patients diagnosed with SCA and aims to estimate the predictive ability of a set of sociodemographic variables for the different dimensions of the General Health Questionnaire. METHODS: A total of 80 patients diagnosed with SCA were assessed using a sociodemographic questionnaire and the SF-36 General Health Questionnaire. The sociodemographic variables studied were sex, age, presence of a carer, employment status, and time elapsed from diagnosis of the disease. RESULTS: The 8 subscales of the SF-36 show positive and significant correlations to one another. Mean scores obtained on each SF-36 subscale differ between women and men, although this difference is significant only on the general health subscale, with men scoring higher than women. We found significant age differences on the vitality and social function subscales, with higher scores among younger patients (< 34 years). The variable 'presence of a carer' accounts for most of the total variance of the questionnaire. CONCLUSIONS: The SF-36 is a valid and useful instrument for evaluating HRQOL in patients diagnosed with SCA. Presence of a carer seems to be a determinant of self-perceived quality of life in these patients.
Keywords:
Ataxias espinocerebelosas; Calidad de vida relacionada con la salud; Cuestionario; Health-related quality of life; Pacientes; Patients; Questionnaire; Short Form 36 Health Survey; Spinocerebellar ataxia
Authors: Chaya N Murali; Seema R Lalani; Mahshid S Azamian; Christina Y Miyake; Hadley Stevens Smith Journal: Eur J Hum Genet Date: 2022-06-13 Impact factor: 5.351
Authors: Roderick P P W M Maas; Ivan Toni; Jonne Doorduin; Thomas Klockgether; Dennis J L G Schutter; Bart P C van de Warrenburg Journal: BMC Neurol Date: 2019-07-04 Impact factor: 2.474