Health-related quality of life in children and adolescents with juvenile localized scleroderma

Orzechowski, Nicole M.; Davis, Dawn M.; Mason, Thomas G.; Crowson, Cynthia S.; Reed, Ann M.

doi:10.1093/rheumatology/kep059

Cited by 37 publications

(55 citation statements)

References 10 publications

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“…As there were very few patients in the 4-to 7-year-old group in our study, this group was evaluated with the 8-to 11-year-old group and renamed the 4-to 11-year-old group. Although the KINDL was validated for use up to the age of 16, according to the final results on reliability and validity of the Revised Children's Quality of Life Survey for Children and Adolescents (KINDL-R), this test can be used for adolescents at 17 and 18 years of age, as shown in some recent studies [3,7,18]. The self-report for age 4-7 encompasses 12 items with three categorical answers.…”

Section: Methodsmentioning

confidence: 99%

“…The World Health Organization (WHO) defines QoL as "the individuals' perception of their position in life in the context of culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns" [2]. QoL has been investigated in several acute and chronic diseases in children such as cancer, diabetes, obesity, phenylketonuria, asthma, bipolar disorders, and scleroderma [3][4][5][6][7]. However, there are only a few studies concerning QoL in children and adolescents with chronic kidney disease (CKD) on dialysis therapy or after renal transplantation [8][9][10][11][12][13][14][15].…”

Section: Introductionmentioning

confidence: 99%

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Quality of life in children with chronic kidney disease (with child and parent assessments)

et al. 2010

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Herein the results of a multicenter study from the Turkish Pediatric Kidney Transplantation Study Group are reported. The aims of this study were to compare the quality of life (QoL) scores of Turkish children who are dialysis patients (DP), renal transplant recipients (TR), and age-matched healthy controls and to compare child-self and parent-proxy scores. The Turkish versions of the Kinder Lebensqualität Fragebogen (KINDL(R)) questionnaires were used as a QoL measure. The study group consisted of 211 children and adolescents with chronic kidney disease (CKD) (139 TR and 72 DP aged between 4-18 years; 13.7 +/- 3.5 years) from 11 university hospitals, 129 parents of these patients, 232 age-matched healthy children and adolescents (aged between 4-18 years; 13.1+/-3.5 years) and 156 of their parents. Patients with CKD had lower scores in all subscales except for physical well-being than those in the control group. TR had higher scores in physical well-being, self-esteem, friends' subscales, and total scores than DP. Child-self scores were lower than parent-proxy scores, especially in CKD, DP, and control groups. Concordance between parent-proxy and child-self reports in the TR, DP, CKD, and control groups was only moderate for the majority of subscales (r = 0.41-0.61). It was concluded that parent-proxy scores on the QoL were not equivalent to child-self scores and that evaluating both children's and parents' perspectives were important. Additionally, psychosocial counseling is crucial not only for patients with CKD but also for their parents.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Quality of life in children with chronic kidney disease (with child and parent assessments)

et al. 2010

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“…In this article, AD and eczema are used synonymously [2]. AD in childhood can result in a significant reduction in quality of life compared with healthy children or children with other chronic illnesses, such as diabetes or neurological disorders [3,4,5]. Furthermore, AD leads to substantial social and financial costs [6].…”

Section: Introductionmentioning

confidence: 99%

Validation of a Parental Questionnaire to Identify Atopic Dermatitis in a Population-Based Sample of Children up to 2 Years of Age

et al. 2013

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Background: Validated eczema questionnaires have been available for schoolchildren only, but the incidence of atopic dermatitis (AD) is highest during infancy. Objective: To validate a parental questionnaire to identify AD in children up to 2 years of age. Methods: Parents of 476 children answered a written questionnaire prior to an examination by a physician. Sensitivity, specificity, predictive values and test-retest reliability of the questionnaire were assessed. Results: A total of 245 (51%) girls and 231 (49%) boys, aged 1-24 months, with and without physician-diagnosed AD participated. Seventy-one children (15%) had physician-diagnosed AD. Validation of the questionnaire by comparisons with physicians' diagnoses showed a sensitivity of 0.87 (95% confidence interval, CI, 0.77-0.94) and a specificity of 0.98 (95% CI, 0.96-0.99). The positive predictive value was 0.90 (95% CI, 0.80-0.96) and the negative predictive value was 0.98 (95% CI, 0.96-0.99). Conclusion: The questionnaire identified AD in children aged 0-2 years with high accuracy.

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“…disfiguring, particularly if the face and scalp are affected, and this interferes with quality of life in these young patients (3).…”

mentioning

confidence: 99%

Methotrexate treatment in juvenile localized scleroderma: A randomized, double-blind, placebo-controlled trial

Zulian¹,

Martini²,

Vallongo³

et al. 2011

Arthritis & Rheumatism

192

151

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Objective. Juvenile localized scleroderma is a chronic progressive fibrotic disorder of the skin that causes permanent disability and aesthetic damage. This study was undertaken to assess the safety and efficacy of methotrexate (MTX) in the treatment of juvenile localized scleroderma.Methods. In this double-blind study, patients with active juvenile localized scleroderma were randomized (2:1) to receive oral MTX (15 mg/m 2 , maximum 20 mg) or placebo once weekly, for 12 months or until treatment failure. Both groups received oral prednisone (1 mg/kg/ day, maximum 50 mg) for the first 3 months. A target lesion was evaluated clinically, with infrared thermography and using a computerized scoring system with skin score rate (SSR) evaluation. Response to treatment was defined as the absence of new lesions, SSR <1, and a decrease in lesion temperature of at least 10% compared to baseline. Treatment failure was defined as the occurrence of new lesions, SSR >1, or increased lesion temperature. All analyses were done on the intent-totreat population.Results. Of the 85 patients screened, 70 (ages 6-17 years) were randomized (46 to the MTX group, 24 to the placebo group). The mean disease duration was 2.3 years. After an initial response in all patients, disease relapsed in 15 MTX-treated patients (32.6%) and 17 placebo-treated patients (70.8%) (P < 0.005). New lesions appeared in 3 MTX-treated patients (6.5%) versus 4 placebo-treated patients (16.7%). The mean SSR decreased from 1 to 0.79 in the MTX group and increased from 1 to 1.1 in the placebo group, and the mean target lesion temperature decreased by 44.4% in the MTX group versus 12.1% in the placebo group. Twenty-six patients in the MTX group (56.5%) and 11 patients in the placebo group (45.8%) developed mild side effects related to treatment. None of the side effects were severe enough to necessitate treatment discontinuation.Conclusion. Our findings indicate that MTX is efficacious in the treatment of juvenile localized scleroderma and is well tolerated.

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Health-related quality of life in children and adolescents with juvenile localized scleroderma

Cited by 37 publications

References 10 publications

Quality of life in children with chronic kidney disease (with child and parent assessments)

Quality of life in children with chronic kidney disease (with child and parent assessments)

Validation of a Parental Questionnaire to Identify Atopic Dermatitis in a Population-Based Sample of Children up to 2 Years of Age

Methotrexate treatment in juvenile localized scleroderma: A randomized, double-blind, placebo-controlled trial

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