Validation of the LupusQoL in Venezuela: A specific measurement of quality of life in patients with systemic lupus erythematosus

• Published in: Reumatología clinica (Barcelona) 2022-06, Vol.18 (6), p.355-360
• Main Authors: Carrión-Nessi, Fhabián S., Marcano-Rojas, María V., Freitas-DeNobrega, Diana C., Romero Arocha, Sinibaldo R., Antuarez-Magallanes, Allen W., Fuentes-Silva, Yurilís J.
• Format: Article
• Language: English
• Subjects: Adult; Calidad de vida relacionada con la salud; Cross-Sectional Studies; Encuestas y cuestionarios; Female; Humans; Lupus eritematoso sistémico; Lupus Erythematosus, Systemic; Male; Quality of Life; Reproducibility of Results; Surveys and questionnaires; Systemic lupus erythematosus; Venezuela
• ISSN: 2173-5743; 2173-5743
• DOI: 10.1016/j.reumae.2021.02.005

Traditionally, the health-related quality of life (HRQoL) of patients with systemic lupus erythematosus (SLE) has been assessed using instruments that neglect the specific characteristics of the disease. This study determines the validity of the Lupus Quality of Life (LupusQoL) questionnaire as a psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela and establishes the cutoff points of the questionnaire for the Venezuelan population. A cross-sectional study was conducted that included patients with SLE from April to July 2018. Patients completed the LupusQoL and the “Generalitat de Catalunya” (GENCAT) scale; sociodemographic data, activity index (SLEDAI) and accumulated damage (SLICC), were obtained. Reliability was evaluated by internal consistency and the convergent validity of the LupusQoL was determined with the GENCAT scale. Of the 100 patients, 93% were women, the mean age was 42 years old (SD: 13) and the mean duration of the disease was 11 years (SD: 9); the mean of SLEDAI and SLICC was 3 and 1, respectively. The cutoff point that defined a “better” or “worse” HRQoL for LupusQoL was 64.55 points. A moderate convergence was found after grouping, according to the cutoff points, of the LupusQoL with the GENCAT scale (Cohen’s kappa coefficient = .556; p = .000). The LupusQoL is a valid psychometrically stable instrument to measure the HRQoL of patients with SLE in Venezuela. Cutoff points were established to stratify the HRQoL in the Venezuelan population with LES, being useful to complement a comprehensive evaluation. Tradicionalmente, la calidad de vida relacionada con la salud (CVRS) de los pacientes con lupus eritematoso sistémico (LES) ha sido evaluada utilizando instrumentos que desatienden las características específicas de la enfermedad. Este estudio determina la validez del cuestionario Lupus Quality of Life (LupusQoL) como instrumento psicométricamente estable para medir la CVRS de los pacientes con LES en Venezuela, y establece los puntos de corte del cuestionario para la población venezolana. Se realizó un estudio de corte transversal que incluyó pacientes con LES desde abril hasta julio de 2018. Los pacientes completaron el LupusQoL y la escala Generalitat de Catalunya (GENCAT); se obtuvieron los datos sociodemográficos, índices de actividad (SLEDAI) y daño acumulado (SLICC). Se evaluó la fiabilidad mediante consistencia interna y se determinó la validez convergente del LupusQoL con la escala GENCAT. De