Health‐related quality of life in juvenile‐onset systemic lupus erythematosus and its relationship to disease activity and damage

Ruperto, Nicolino; Buratti, Silvia; Duarte-Salazár, Carolina; Pistorio, Angela; Reiff, Andreas; Bernstein, Bram; Maldonado-Velazquez, Maria Rocio; Beristain-Manterola, Rosalía; Maeno, Nobuaki; Takei, Syuji; Falcini, Fabio; Lepore, Loredana; Spencer, Charles H.; Pratsidou-Gertsi, Polixeni; Martini, Alberto; Ravelli, Angelo

doi:10.1002/art.20412

Cited by 97 publications

(95 citation statements)

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“…Also the impairment in general health perceptions and parent emotional subscales of the CHQ would suggest that parents of patients with JIA are mostly concerned with their child's overall health and resistance/susceptibility to sickness, and they are emotionally distressed about their child's physical, emotional, mental, and social functioning. Notably, these HRQOL areas were also found to be mostly affected in children and adolescents with systemic lupus erythematosus (23). The mean values of the behavior, global behavior, mental health, self-esteem, and family cohesion subscales were close to those observed in the control group.…”

Section: Discussionmentioning

confidence: 51%

Proxy‐reported health‐related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study

Oliveira

Ravelli

Pistorio

et al. 2007

Arthritis & Rheumatism

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131

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Objective. To investigate the proxy-reported health-related quality of life (HRQOL) and its determinants in patients with juvenile idiopathic arthritis (JIA).Methods. In this multinational, multicenter, cross-sectional study, HRQOL of patients with JIA was assessed through the Child Health Questionnaire (CHQ) and was compared with that of healthy children of similar age from the same geographic area. Potential determinants of HRQOL included demographic data, physician's and parent's global assessments, measures of joint inflammation, Childhood Health Assessment Questionnaire (CHAQ), and erythrocyte sedimentation rate. Results. A total of 6,639 participants (3,324 with JIA and 3,315 healthy) were enrolled from 32 countries. The mean ؎ SD physical and psychosocial summary scores of the CHQ were significantly lower in patients with JIA than in healthy children (physical: 44.5 ؎ 10.6 versus 54.6 ؎ 4.0, P < 0.0001; psychosocial: 47.6 ؎ 8.7 versus 51.9 ؎ 7.5, P < 0.0001), with the physical well-being domain being most impaired. Patients with persistent oligoarthritis had better HRQOL compared with other subtypes, whereas HRQOL was similar across patients with systemic arthritis, polyarthritis, and extended oligoarthritis. A CHAQ score >1 and a pain intensity rating >3.4 cm on a 10-cm visual analog scale were the strongest determinants of poorer HRQOL in the physical and psychosocial domains, respectively. Conclusion. We found that patients with JIA have a significant impairment of their HRQOL compared with healthy peers, particularly in the physical domain. Physical well-being was mostly affected by the level of functional impairment, whereas the intensity of pain had the greatest influence on psychosocial health. KEY WORDS.Health-related quality of life; Juvenile idiopathic arthritis; Disability.

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Section: Discussionmentioning

confidence: 51%

Proxy‐reported health‐related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study

Oliveira

Ravelli

Pistorio

et al. 2007

Arthritis & Rheumatism

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131

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“…Young persons with SLE generally have severe disease at onset, requiring high-dose corticosteroid and immunosuppressive drugs for disease control [2]. In children, SLE is associated with significant morbidity consequent to the disease [3,4]. The treatment of SLE results in a wide-ranging spectrum of physical, functional, and psychological damage that impacts the well-being of children with SLE.…”

Section: Introductionmentioning

confidence: 99%

Appearance concern and depression in adolescent girls with systemic lupus erythematous

Shi

Wei

et al. 2012

Clin Rheumatol

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To examine the relationship between physical appearance concern and psychological distress in female adolescent patients with systemic lupus erythematosus (SLE) was the aim of this study. A total of 84 adolescent SLE female patients and 80 age-matching healthy adolescents were evaluated for levels of appearance concern and a range of illness-specific measures to determine how these demographic and clinical variables were related to the dependent variable psychological distress. The Systemic Lupus Erythematosus Disease Activity Index was used to assess disease activity. Assessment of depression was conducted through the children depression inventory (CDI). Appearance concern was measured using the SelfPerception Profile for Children. The total CDI was 18.5± 4.3, indicating that these patients had more depressive symptoms, comparing with age-and sex-matched healthy controls. Furthermore, a total of 32 (38.1 %) patients had CDI larger than 19 points, indicating that they have relatively higher risk in developing depression. The CDI in control group was significantly lower than that in the SLE group (11.4±1.7 vs. 18.5±4.3, t09.93, p<0.05). Using correlation and multiple regression analyses, we found that both appearance concern and age were predictive of depression in patients with SLE, and the former was highly correlated. This indicates that appearance concern may be associated with depression in female adolescent SLE patients. The results suggest that appearance concern is strongly associated with depression in female adolescent patients with SLE and should be routinely assessed.

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“…De acuerdo con la actividad lúpica, muchos estudios son concluyentes en que es un factor determinante para la percepción favorable o no de la CVRS, incluso independientemente de la edad, el género, la educación y el estatus socio-económico (Da Costa, et al, 2000;Dobkin, et al, 1999;Freire, et al, 2007;Mok, et al, 2009;Wang, et al, 2001;Ruperto, et al, 2004;Zheng, et al, 2009). Mas sin embargo en nuestro estudio se observa que la interacción de la variable sociodemográfica ocupación con la actividad lúpica afecta de manera significativa sobre la dimensión salud mental, mientras que la ansiedad asociada a la actividad lúpica afecta el rol físico de la CVRS.…”

Section: Discussionunclassified

“…Esto pondría Calidad de vida RelaCionada Con la salud, faCToRes psiColóGiCos y fisiopaTolóGiCos en paCienTes Con diaGnósTiCo de lupus eRiTemaToso sisTémiCo -lesser uno de los factores explicativos de la CVRS favorable de los pacientes con LES ya que esta comorbilidad fue mínima en nuestro estudio. En cuanto al efecto acumulativo de la enfermedad sobre los órganos o toxicidad por medicamentos (daño orgánico) sobre la CVRS los estudios no son concluyentes: en unos no se encuentran relaciones significativas mientras que en otros se ha encontrado que los índices físico y mentales de la CVRS se ven afectados y otros han encontrado que el daño orgánico afecta algunas dimensiones como la función física y la función social del cuestionario de Salud MOS SF-36 (Bruce, et al, 1999;Gladman, et al, 1997;Mok, et al, 2009;Ruperto, et al, 2004;Wang, et al, 2001). Consecuentemente en nuestro estudio se observa que el daño orgánico asociado con síntomas de depresión afecta la función social de la CVRS.…”

Section: Discussionunclassified

“…Respecto a la presencia de daño renal algunos estudios argumentan que la CVRS puede reducirse de manera significativa mientras que otros plantean lo contrario, ya que los pacientes pueden en el tiempo tener un proceso de adaptación progresivo a las limitaciones asociadas a la enfermedad de LES (Clarke, et al, 2008;Hanly, McCurdy, Fougere, Douglas y Thompson, 2004;Ruperto, et al, 2004). En nuestro estudio no hubo relación estadísticamente significativa de daño renal sobre la CVRS lo que podría explicarse por la baja presencia de esta variable en el estudio.…”

Section: Discussionunclassified

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Calidad de vida relacionada con la salud, factores psicológicos y fisiopatológicos en pacientes con diagnóstico de Lupus Eritematoso Sistémico - LES

et al. 2010

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ResumenEl objetivo de este estudio fue analizar, por un lado, los niveles de ansiedad, depresión, apoyo social, índice de actividad lúpica, fibromialgia, daño orgánico y renal, tiempo de diagnóstico de la enfermedad y factores sociodemográficos en 78 pacientes con diagnóstico de Lupus Eritematoso Sistémico; y analizar el efecto de estas variables sobre la calidad de vida relacionada con la salud. Se emplearon como instrumentos: el cuestionario de Salud MOS SF-36, la Escala Hospitalaria de Ansiedad y Depresión HAD, el cuestionario de Apoyo Social Funcional DUKE-UNK, el Índice de Actividad Lúpica SLEDAI y el Índice de Daño Orgánico SLICC-ACR; y se consideró además el diagnóstico médico de Fibromialgia y de Nefropatía. Los resultados señalaron que factores fisiopatológicos (actividad lúpica y daño orgánico), psicológicos (ansiedad-depresión) y sociodemográficos (ocupación y estado civil) y la interacción entre estos afectan la calidad de vida a nivel mental más que físico en los pacientes con lupus.Palabras clave: Lupus Eritematoso Sistémico, calidad de vida relacionada con la salud, ansiedad, depresión, Fibromialgia. AbstractThe aim of this research was to evaluate the impact of anxiety, depression, social support, Systemic Lupus Erythematosus (SLE) disease activity index, fibromyalgia, organic and kidney damage, and time of diagnosis of disease on Health-related Quality of Life in 78 patients with SLE diagnosis. Participants completed the Health Survey Questionnaire (SF-36), the Hospital Anxiety and Depression (HAD) scale, the Duke-UNK Functional Social Support questionnaire, the SLEDAI (SLE Disease Activity Index), and the SLICC/ACR damage index for SLE. As a complementary measure, Fibromyalgia and Nephropathy diagnosis was considered. The results shown that in patients with lupus, pathophysiological (SLE disease activity index and organic damage), psychological (anxiety-depression) and sociodemographic factors (occupation and civil status) affect the quality of life in the mental domain rather than in the physical level.

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Health‐related quality of life in juvenile‐onset systemic lupus erythematosus and its relationship to disease activity and damage

Cited by 97 publications

References 6 publications

Proxy‐reported health‐related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study

Proxy‐reported health‐related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study

Appearance concern and depression in adolescent girls with systemic lupus erythematous

Calidad de vida relacionada con la salud, factores psicológicos y fisiopatológicos en pacientes con diagnóstico de Lupus Eritematoso Sistémico - LES

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