RESUMEN
Antecedentes y objetivos: 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. Pacientes y métodos: 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. Resultados: De los 100 pacientes, el 93% eran mujeres, la media de edad fue de 42años (DE: 13) y la media de duración de la enfermedad fue de 11años (DE: 9); la media de SLEDAI y SLICC fue de 3 y 1, respectivamente. El punto de corte que definió una «mejor» o «peor» CVRS para el LupusQoL fue 64,55 puntos. Se encontró una convergencia moderada posterior a la agrupación, según los puntos de corte, del LupusQoL con la escala GENCAT (coeficiente kappa de Cohen=0,556; p=0,000). Conclusiones: El LupusQoL es válido como instrumento psicométricamente estable para medir la CVRS de los pacientes con LES en Venezuela. Se establecieron los puntos de corte que permiten estratificar la CVRS de los pacientes venezolanos con LES, siendo de utilidad para complementar una evaluación integral.(AU)
Background and objectives: 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. Patients and methods: 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. Results: Of the 100 patients, 93% were women, the mean age was 42years old (SD: 13) and the mean duration of the disease was 11years (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). Conclusions: 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.(AU)
Asunto(s)
Humanos , Femenino , Adulto , Lupus Eritematoso Sistémico , Venezuela , Calidad de Vida , Encuestas y Cuestionarios , Estudios Transversales , ReumatologíaRESUMEN
BACKGROUND: We have here assessed the impact of demographic, clinical, and treatment compliance characteristics on health-related quality of life (HRQoL) of Venezuelan patients with systemic lupus erythematosus (SLE). We have used a disease-specific questionnaire, the Lupus Quality of Life (LupusQoL), validated in our patient population, to measure HRQoL. METHODS: A cross-sectional study was conducted among 100 patients with SLE from outpatient clinics. Patients completed a form with demographic, clinical, and treatment compliance data, and the LupusQoL questionnaire. HRQoL was classified as better or worse according to previously established cut-off points for this patient population. Spearman's r test was used to determine the correlations between age, years of education, disease duration, SLEDAI, and SLICC-DI with the eight domains of the LupusQoL. Mann-Whitney U test was used to compare the HRQoL between the two groups of patients according to treatment compliance. Binomial logistic regression using the backward stepwise selection method was performed to identify the risk factors associated with each of the eight domains of the LupusQoL among patients with inactive (SLEDAI < 4) and active (SLEDAI ≥ 4) SLE. RESULTS: HRQoL of our patients was classified as better in all domains of the LupusQoL. Age correlated negatively with all domains of the LupusQoL, except with "burden to others", and disease activity correlated negatively with all domains of the LupusQoL, except with "intimate relationships" and "burden to others" (p < 0.05). Patients who fully complied with indicated treatment had higher scores in "physical health" domain compared to patients who did not comply with at least one of the prescribed medications (p < 0.05). In patients with active SLE, a risk factor associated with worse "planning" and "intimate relationships" was advanced age, while having had SLE flare-ups in the previous six months was a risk factor associated with worse "physical health" (p < 0.05). CONCLUSION: Age and disease activity were negatively correlated with almost all domains of the LupusQoL, and treatment compliance was associated with higher score in the "physical health" domain. Disease control and treatment compliance should be the main goals for a better HRQoL in our patients with SLE.
RESUMEN
BACKGROUND AND OBJECTIVES: 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. PATIENTS AND METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.
Asunto(s)
Lupus Eritematoso Sistémico , Calidad de Vida , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Reproducibilidad de los Resultados , VenezuelaRESUMEN
BACKGROUND AND OBJECTIVES: 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. PATIENTS AND METHODS: 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. RESULTS: Of the 100 patients, 93% were women, the mean age was 42years old (SD: 13) and the mean duration of the disease was 11years (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). CONCLUSIONS: 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.
RESUMEN
El lupus eritematoso sistémico (LES) es una enfermedad autoinmune que puede tener repercusiones negativas en la calidad de vida (CV) de quienes la padecen. La CV puede verse influida por factores sociodemográficos (FSD) relacionados con la enfermedad en sí. Objetivo: Determinar la relación entre los FSD y la CV en pacientes con LES. Métodos: Estudio descriptivo, de corte transversal, de campo y observacional, donde se evaluaron 100 pacientes con diagnóstico de LES. Se emplearon dos encuestas: una para la recolección de datos sociodemográficos y el formulario de la Escala GENCAT. Resultados: La edad promedio fue 42,9 años ± 13,5, el sexo más afectado fue femenino con 93%, los años de estudio promedio fueron 11,4 años ± 4,4 y el tiempo de evolución del LES promedio fue 11,1 años ± 9,5. La CV según el formulario de la Escala GENCAT fue aceptable; la edad avanzada y mayor tiempo de evolución de LES se asoció con menor CV, y mayor escolaridad se asoció con mayor CV. Conclusiones: La CV fue aceptable según la Escala GENCAT, y se encontraron asociaciones entre la CV y edad, años de estudio y tiempo de evolución del LES que fueron estadísticamente significativas(AU)
Systemic lupus erythematosus (SLE) is an autoimmune disease that can have a negative impact on the quality of life (QoL) of those who suffer from it. QoL may be influenced by sociodemographic factors (SDF) related to the disease itself. Objective: Determine the relationship between the SDF and the QoL in patients with SLE. Methods: Descriptive, cross-sectional, field and observational study, where 100 patients with a diagnosis of SLE were evaluated. Two surveys were used: one for the collection of sociodemographic data and the GENCAT Scale form. Results: The average age was 42.9 years ± 13.5, the most affected sex was female with 93%, the average study years were 11.4 years ± 4.4 and the evolution time of the average SLE was 11.1 year ± 9.5. TheQoL according to the GENCAT Scale form was acceptable; the advanced age and longer time of evolution of SLE was associated with lower QoL, and higher schooling was associated with higher QoL. Conclusions: The QoL was acceptable according to the GENCAT Scale, and associations were found between the QoL and age, years of study and time of evolution of the disease, which were statistically significant(AU)
