Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study

Gutiérrez-Suárez, Raúl; Pistorio, Angela; Cruz, Alejandro; Norambuena, Ximena; Flatø, Berit; Rumba, I.; Harjaček, Miroslav; Nielsen, Susan; Sušić, Gordana; Mihaylova, Dimitrina; Huemer, Christian; Melo-Gomes, José; Andersson‐Gäre, Boel; Balogh, Zsolt J.; Cunto, Carmen De; Veselý, Richard; Pagava, Karaman; Romicka, A; Burgos‐Vargas, Rubén; Martini, Alberto; Ruperto, Nicolino

doi:10.1093/rheumatology/kel218

Cited by 129 publications

(124 citation statements)

References 16 publications

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“…In other studies, physical disability also appears to be strongly related to HRQOL (14,16,22,39). Besides, physical activity is generally impaired in adolescents with JIA (40).…”

mentioning

confidence: 67%

“…HRQOL studies in JIA patients are scarce in Europe (14,15,23) and include heterogeneous groups of patients based on different age cohorts and with different national health care systems (19,24). Many studies use proxy reporting (14,25,26), whereas other studies have shown that self-reporting appears to be more reliable (20,27) for evaluating HRQOL.…”

Section: Introductionmentioning

confidence: 99%

“…Many studies use proxy reporting (14,25,26), whereas other studies have shown that self-reporting appears to be more reliable (20,27) for evaluating HRQOL. Different HRQOL questionnaires, both generic and disease specific, have been used for children with JIA.…”

Section: Introductionmentioning

confidence: 99%

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Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web‐based survey

Haverman¹,

Grootenhuis²,

M³

et al. 2012

Arthritis Care & Research

112

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Objective. Children with juvenile idiopathic arthritis (JIA) experience functional impairment due to joint manifestations of the disease. The aim of our present study was to assess health-related quality of life (HRQOL) and its predictors in a group of children and adolescents with JIA. Methods. The study sample includes all JIA patients (ages 6 -18 years) who consulted a pediatric rheumatologist in Amsterdam, The Netherlands, between February 2009 and March 2010. HRQOL was measured using the Paediatric Quality of Life Inventory 4.0 (ages 6 -18 years). Functional ability was measured using the Childhood Health Assessment Questionnaire, and medical and sociodemographic parameters were assessed. The study sample was compared to a Dutch youth norm population including children with other chronic health conditions. The proportion of children with JIA with an impaired HRQOL (<1 SD) was evaluated and multivariate regression analyses were performed to predict HRQOL outcome. Results. Of the eligible patients, 64.1% (n ‫؍‬ 152) participated. Both children (ages 6 -12 years) and adolescents (ages 13-18 years) with JIA reported a significantly lower HRQOL in almost all domains compared to either healthy controls or children with other chronic health conditions. Approximately half of the children with JIA showed an impaired HRQOL. The main predictors of HRQOL were functional ability, pain, subjective burden of medication use, and school absence. Conclusion. The HRQOL is severely affected in children and adolescents with JIA. These findings underline the necessity to systematically monitor HRQOL in daily clinical practice.

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“…In other studies, physical disability also appears to be strongly related to HRQOL (14,16,22,39). Besides, physical activity is generally impaired in adolescents with JIA (40).…”

mentioning

confidence: 67%

Section: Introductionmentioning

confidence: 99%

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Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web‐based survey

Haverman¹,

Grootenhuis²,

M³

et al. 2012

Arthritis Care & Research

112

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“…Overall quality of life, defined as an individual's perception of their position in life, may show little impact of a disease or its treatment, but HRQoL is expected to be responsive to therapeutic interventions (3)(4)(5)(6)(7)(8). Suboptimal HRQoL in children with juvenile idiopathic arthritis (JIA) has been reported up to 6 years after diagnosis (6,(9)(10)(11)(12)(13), and recent studies suggest a dissociation between HRQoL and disease activity, pain, and disability (4,9,14). Suboptimal HRQoL has been observed in children with inactive disease or minimal disease activity (4).…”

Section: Introductionmentioning

confidence: 99%

Health‐Related Quality of Life in an Inception Cohort of Children With Juvenile Idiopathic Arthritis: A Longitudinal Analysis

Oen

Guzman

Dufault

et al. 2017

Arthritis Care & Research

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Objective. To describe changes in health-related quality of life (HRQoL) over time in children with juvenile idiopathic arthritis (JIA), relative to other outcomes, and to identify predictors of unfavorable HRQoL trajectories. Methods. Children with JIA in the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) cohort were included. The Juvenile Arthritis Quality of Life Questionnaire (JAQQ, a standardized instrument), healthrelated Quality of My Life (HRQoML, an instrument based on personal valuations), and JIA core variables were completed serially. Analyses included median values, Kaplan-Meier survival curves, and latent trajectory analysis. Results. A total of 1,249 patients enrolled at a median of 0.5 months after diagnosis were followed for a median of 34.2 months. The degree of initial HRQoL impairment and probabilities of reaching the best possible HRQoL scores varied across JIA categories (best for oligoarthritis, worst for rheumatoid factor-positive polyarthritis). Median times to attain best possible HRQoL scores (JAQQ 59.3 months, HRQoML 34.5 months), lagged behind those for disease activity, pain, and disability measures. Most patients followed trajectories with minimal or mild impairment; however, 7.6% and 13.8% of patients, respectively, followed JAQQ and HRQoML trajectories with persistent major impairment in HRQoL. JIA category, aboriginal ethnicity, and baseline disease activity measures distinguished between membership in trajectories with major and minimal impairments. Conclusion. Improvement in HRQoL is slower than for disease activity, pain, and disability. Improvement of a measure based on respondents' preferences (HRQoML) is more rapid than that of a standardized measure (JAQQ). Higher disease activity at diagnosis heralds an unfavorable HRQoL trajectory.

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“…4 6 Children with JA experience impairment in health-related QOL (HRQOL) compared to their healthy peers, as measured by decrements in the domains of physical and psychosocial well-being. 7 Chronic arthritis also negatively impacts emotional, social and school functioning. 4,5,8,9 Adult patients who had childhood-onset arthritis have been shown to have high rates of anxiety and depressive illness, 5 and have a higher mortality rate compared to the general population.…”

Section: Childhood Quality Of Life In the Changing Landscape Of Pediamentioning

confidence: 99%

A qualidade de vida infantil no panorama em mudança da reumatologia pediátrica

Reiff¹

2008

J. Pediatr. (Rio J.)

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et al. A cluster-randomized trial of benchmarking and multimodal quality improvement to improve rates of survival free of bronchopulmonary dysplasia for infants with birth weights of less than 1250 grams. Pediatrics. 2007;119:876-90 Prior to their introduction, the therapeutic armamentarium was not only limited in its extent and toxicity but also by its efficacy. On the other hand, the available tools assessing outcome were narrowly focused, literally applied from the adult literature, untested and mainly failed to assess the true impact of a therapeutic approach, which ultimately remains the only relevant one, QOL.The article by Klatchoian et al. 1 from São Paulo, Brazil, which this editorial is dedicated to, examines the validity of a QOL score in a Brazilian population of children with systemic lupus (SLE) and juvenile arthritis (JA).In the latter population, it has finally been recognized that these diseases can persist into adulthood causing disability, pain, and physical dysfunction. The author is member of Scientific Advisory Board at Abbott Laboratories, Pfizer, Merck, Novartis, Promotional SpeakersBureau -Amgen Inc., Wyeth Pharmaceuticals, Abbott.Suggested citation: Reiff A. Childhood quality of life in the changing landscape of pediatric rheumatology.

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Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study

Abstract: We found that patients with JIA have a significant impairment of their HRQL compared with healthy peers, particularly in the physical domain. Disability and pain are the most important determinants of physical and psychosocial well-being irrespective of the geographic area of origin.

Cited by 129 publications

References 16 publications

Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web‐based survey

Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web‐based survey

Health‐Related Quality of Life in an Inception Cohort of Children With Juvenile Idiopathic Arthritis: A Longitudinal Analysis

A qualidade de vida infantil no panorama em mudança da reumatologia pediátrica

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