Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Moorthy, Lakshmi N.; Roy, Elizabeth; Kurra, Vamsi; Peterson, Margaret G. E.; Hassett, Afton L.; Lehman, Thomas J. A.; Scott, Christiaan; El‐Ghoneimy, Dalia; Saad, Shereen; Feky, Reem El; Al‐Mayouf, Sulaiman M.; Doležalová, Pavla; Malcová, Hana; Herlin, Troels; Nielsen, Susan; Wulffraat, Nico; Royen, Annet van; Marks, Stephen D.; Belot, Alexandre; Brunner, Jürgen; Huemer, Christian; Foeldvari, Ivan; Horneff, Gerd; Saurenman, Traudel; Schroeder, S; Pratsidou-Gertsi, Polyxeni; Trachana, Maria; Uziel, Yosef; Aggarwal, Amita; Constantin, Tamás; Cimaz, Rolando; Giani, Theresa; Cantarini, Luca; Falcini, Fabio; Magni‐Manzoni, Silvia; Ravelli, Angelo; Rigante, Donato; Zulian, Francesco; Miyamae, Takako; Yokota, Shumpei; Sato, Juliana de Oliveira; Magalhães, Cláudia Saad; Len, Cláudio Arnaldo; Appenzeller, Simone; Knupp, Sheila Oliveira; Rodrigues, M; Sztajnbok, Flávio; Almeida, Rozana Gasparello de; Jesús, Adriana Almeida de; Campos, Lúcia; Silva, Clovis; Lazăr, Călin; Sušić, Gordana; Avčin, Tadej; Cuttica, Rubén; Burgos‐Vargas, Rubén; Faugier, Enrique; Antón, Jordi; Modesto, Consuelo; Vazquez, Liza; Barillas, Lilliana; Barinstein, Laura; Sterba, Gary; Maldonado, Irama; Özen, Seza; Kasapçopur, Özgür; Demirkaya, Erkan; Benseler, Susanne M.

doi:10.1186/1546-0096-12-49

Cited by 9 publications

(6 citation statements)

References 7 publications

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“…7 In SLE, non-HRQoL is also compromised by the disease or its treatment. 8 Assessments of PROs are important in SLE given the chronicity of the disease, unpredictable flares, medication side effects and damage, and for their ability to systematically evaluate and provide patients’ perspective on effects of the disease or its treatment on pertinent QoL domains, information that is not captured by DA tools. 9 Furthermore, presenting a patient with relevant PRO data from clinical trials, in a language they can better relate to and understand about potential benefits or harm on aspects of their health deemed pertinent and important to them by self-report, may help shared decision making and adherence with their treatment plans.…”

Section: Introductionmentioning

confidence: 99%

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Patient-reported outcomes in lupus clinical trials with biologics

Annapureddy

Devilliers

Jolly

2016

Lupus

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Therapeutic advances in systemic lupus erythematosus (SLE) are greatly needed. Despite advances in our knowledge of pathogenesis of the disease and targets, treatment remains a significant challenge. Finding effective and relatively safe medications remains one of the top priorities. SLE significantly impairs quality of life (QoL), and patient-reported outcomes (PROs) measure a unique aspect of the disease not captured by disease activity. Inclusion of PRO measurements is encouraged in SLE clinical trials, as they allow capturing benefits of a proposed intervention in language patients can relate to and in areas deemed pertinent and important to and by patients. Availability of patient-reported and patient-centric clinical trials data may facilitate patients in informed and shared decision making, and allow for comparative cost-effectiveness evaluation for future resource allocation and reimbursements. Herein we review clinical trials with biologic therapies wherein PRO tools were included in the study design.

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Section: Introductionmentioning

confidence: 99%

“…These tools are the SLE Symptom Checklist (SCC), LupusQoL, SLEQOL, L-QoL, LupusPRO, Lupus Impact Tracker (LIT), Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY), and SLE-specific body image tool (BILS). 8,14–16 Responsiveness data are available for LupusPRO, LIT, LupusQoL, and SLEQOL. 11,13,17,18…”

Section: Introductionmentioning

confidence: 99%

Patient-reported outcomes in lupus clinical trials with biologics

Annapureddy

Devilliers

Jolly

2016

Lupus

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“…The absence of data pertaining to disease activity and quality of life scores (CHAQ and JADAS) in certain countries is notable, as routine evaluation of these scores is not uniformly conducted across all centers. This emphasizes the imperative need for the implementation of strategic initiatives aimed at enhancing the capacity of healthcare professionals specializing in pediatric rheumatology throughout our continent to regularly assess and document the quality of life among JIA patients (39,40). The prospective segment of the PAFLAR registry, incorporating prospective follow-up data, is anticipated to address and rectify this existing gap.…”

Section: Paflar Jia Registry Designmentioning

confidence: 99%

The Clinical-Epidemiological Profile of Juvenile Idiopathic Arthritis in Africa: Data from the Paediatric Society of the African League Against Rheumatism (PAFLAR) Registry

MIGOWA,

Hamdi,

Hashad

et al. 2024

Preprint

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Background The spectrum of Juvenile Idiopathic Arthritis (JIA) in Africa is still largely unknown. We thus set out to describe the clinical-epidemiological profile of Juvenile Idiopathic Arthritis across the various regions in Africa. Methods We carried out a retrospective observational cohort study where collaborators were trained on use of the existing PAFLAR REDCAP database to enter data for the JIA patients currently under their care capturing their epidemiological data, clinical features, laboratory investigations, diagnosis and therapy at initial diagnosis. Descriptive statistics including means, standard deviations, medians, interquartile ranges (IQR) for continuous variables and proportions for categorical variables were calculated as appropriate. Tests for difference between groups were performed between categorical variables using Pearson’s chi-square or Fisher’s exact tests. All analyses were performed using SPSS version 22 software. Results We enrolled 302 patients, 58.6% (177 of 302) of whom were female. The mediann age of disease onset was 7 years (range 3–11 years) and the median age at diagnosis was 8.5 years (range 5–12 years). The median duration delay in diagnosis was 6 months (range 1-20.8 months). The JIA sub types included Systemic JIA 18.9% (57), Oligoarticular JIA 19.2% (83), Polyarticular RF + ve 5% (15), Polyarticular RF-ve 17.9% (54), Enthesitis Related Arthritis (ERA) 18.2% (55), Psoriatic Arthritis 7% (21) and undifferentiated JIA 5.6% 917). As regards treatment the commonest therapies were NSAID therapy at 31.1%, synthetic DMARDs at 18.1%, synthetic DMARDs combined with NSAIDs at 17.5% and steroid therapy at 9.6%. Biological DMARDs accounted for 2.3% of therapies offered to our patients. The average JADAS score was 10.3 (range 4.8–18.2) and the average CHAQ score was 1.3 (range 0.7-2.0) Conclusion Our study highlights the vast spectrum of JIA in Africa while comparing the various therapies available to our patients. The PAFLAR JIA registry strives to ensure a comprehensive representation of the diverse healthcare landscapes within the continent. Further longitudinal observation studies are required to ascertain the long-term outcomes of our patients and ultimately help inform policy to create a more favorable health ecosystem to support the healthcare needs of JIA patients in Africa.

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“…SMILEY has been cross‐culturally adapted and validated in multiple languages (66–69). An adapted version, SMILY‐Illness, has been translated into 28 languages (70).…”

Section: Simple Measure Of Impact Of Lupus Erythematosus In Youngstersmentioning

confidence: 99%

Health‐Related Quality of Life Measures in Childhood‐Onset Systemic Lupus Erythematosus

Treemarcki

Hersh

2020

Arthritis Care & Research

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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Cited by 9 publications

References 7 publications

Patient-reported outcomes in lupus clinical trials with biologics

Patient-reported outcomes in lupus clinical trials with biologics

The Clinical-Epidemiological Profile of Juvenile Idiopathic Arthritis in Africa: Data from the Paediatric Society of the African League Against Rheumatism (PAFLAR) Registry

Health‐Related Quality of Life Measures in Childhood‐Onset Systemic Lupus Erythematosus

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