Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa

Scott, Des; Scott, Christiaan; Jelsma, Jennifer; Abraham, Deepthi Raju; Verstraete, J

doi:10.4102/sajp.v75i1.1335

Cited by 20 publications

(24 citation statements)

References 31 publications

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“…Prolonged data collection is necessary to investigate the responsiveness and reliability of the EQ-5D-Y-5L. These results confirm the relationship of HRQoL with disease severity found in previous studies [ 11 , 26 , 27 ].…”

Section: Discussionsupporting

confidence: 85%

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

et al. 2021

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Background Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional ‘youth’ questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments. Methods The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics. Results Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%). Conclusions Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.

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Section: Discussionsupporting

confidence: 85%

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

et al. 2021

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“…Зважаючи на період, за який аналізувалися статті, більшість із них містила або інформацію з культурної адаптації валідизованих опитувальників, або подавала огляд проблеми оцінки якості життя. Але всі автори відзначають суттєве зниження показників якості життя у дітей з ЮІА [28][29][30][31][32].…”

Section: результати та обговоренняunclassified

“…на предмет їх інформативності та здатності висвітлити проблему якості життя у дітей з ЮІА [28]. D. Scott та співавт.…”

Section: рисунок 1 діаграма публікацій щодо оцінки якості життя у популяції загаломunclassified

“…D. Scott та співавт. у процесі порівнянні EQ-5D-Y, JAMAR та PedsQL Rheumatology Module з'ясували, що шкали, які містять дані про фізичний стан пацієнта, мають приблизно однакові результати, однак результати про психологічний стан дітей відрізнялися, що пояснювалося різним формулюванням питань та назвами шкал [28]. Наприклад, у шкалі JAMAR за показником тривожності не продемонструвано належних результатів, тоді як у EQ-5D-Y та PedsQL він був зниженим до середніх значень [28].…”

Section: рисунок 1 діаграма публікацій щодо оцінки якості життя у популяції загаломunclassified

“…у процесі порівнянні EQ-5D-Y, JAMAR та PedsQL Rheumatology Module з'ясували, що шкали, які містять дані про фізичний стан пацієнта, мають приблизно однакові результати, однак результати про психологічний стан дітей відрізнялися, що пояснювалося різним формулюванням питань та назвами шкал [28]. Наприклад, у шкалі JAMAR за показником тривожності не продемонструвано належних результатів, тоді як у EQ-5D-Y та PedsQL він був зниженим до середніх значень [28]. Особливо актуальним виявилося використання інструменту PedsQL (як загальної, так і ревматологічної анкети) у разі визначення показників якості життя та їх зв'язку з болем, активністю хвороби, емоційними відхиленнями у пацієнтів з ЮІА [33,34].…”

Section: рисунок 1 діаграма публікацій щодо оцінки якості життя у популяції загаломunclassified

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Quality of life problems in children with juvenile idiopathic arthritis and its subtype associated with uveitis (literature review and own research)

Bogmat

Fadieieva

Shevchenko

2022

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Background. The problem of the quality of life (QoL) is relevant nowadays, especially for patients with chronic diseases, including juvenile idiopathic arthritis (JIA) and the subtype of JIA associated with uveitis (JIA-u). The purpose was to carry out a literature review on the QoL in children with JIA and JIA-u, with an analysis of existing tools, the possibility of their use in children, and to assess the QoL indicators of children with JIA, who were treated in a specialized department of the hospital. Materials and methods. The search was performed in the PubMed, Medline, and Google databases using the keywords: JIA, rheumatoid arthritis, uveitis, JIA-u, arthritis with uveitis, QoL, QoL in children. Inclusion criteria were as follows: publication after 2010, use of questionnaires to assess QoL, the sample of patients over 30 people. The type of instrument for assessing QoL, the sample nature, and the QoL indicators of patients were analyzed. The study was carried out at the premises of the State Institution “Institute for Children and Adolescents Health Care of the National Academy of Medical Sciences of Ukraine” and involved 41 children with JIA (22 with polyarticular, and 19 with oligoarticular variants): 25 girls and 16 boys aged 3–17 years with disease duration of 40.2 ± 6.2 months. Thirty-six of them received methotrexate, and 5 — sulfasalazine. The disease activity was assessed by the Juvenile Arthritis Disease Activity Score (JADAS27) and the functional state — by the Childhood Health Assessment Questionnaire (CHAQ). For quality of life assessment, the Pediatric Quality of Life InventoryTM validated for Ukraine was used. Results. The analysis included 73 foreign scientific papers from 2011 to 2021, among which 11 are fully devoted to the assessment of QoL in children with JIA, and 62 partially cover this topic in children and adults with arthritis. In Ukraine, these issues are not discussed enough (6 articles on the evaluation of QoL in children), the factors for its deterioration remain unclear. The level of activity according to JADAS27 in children in subgroups with both poly- and oligoarticular variants was high (11.20 ± 7.04 and 8.9 ± 4.2 points), and the functional state (on CHAQ) — 0.19 ± 0.17. In children with JIA, QoL indicators are reduced, especially on the scales of emotional and school functioning, and closely correlate with disease activity (r = 0.784, p < 0.05). Conclusions. The analysis of the conducted studies showed that decreased disease activity is not accompanied by the QoL indicators optimization, which remain reduced. Recently, the situation with the QoL assessment in domestic medicine has been improving, relevant questionnaires are being actively introduced. However, the ambiguity of the results in world medicine and the presence of a small number of works on this topic determine the urgency of the problem of QoL in children with JIA in Ukraine.

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Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice

et al. 2021

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Juvenile idiopathic arthritis (JIA), as a chronic condition, is associated with symptoms negatively impacting health-related quality of life (HRQL). Regarding growing interest in the implementation of the patient-reported outcome measures (PROMs), we aimed to review the non-disease specific PROMs addressing HRQL assessment, potentially useful in the clinical care of JIA and daily practice. A systematic literature search was conducted using MEDLINE/PubMed, Google Scholar, Scopus and Embase databases (1990 to 2021), with a focus on the recent 5-years period. Entry keywords included the terms: “children”, “adolescents”, “JIA”, “chronic diseases”, “HRQL”, “PROMs” and wordings for the specific tools. Several available PROMs intended to measure HRQL, non-specific to JIA, were identified. The presented outcomes differed in psychometric properties, yet all were feasible in assessing HRQL in healthy children and those with chronic diseases. Both EQ-5D-Y and PedsQL have already been tested in JIA, showing relevant reliability, validity, and similar efficiency as disease-specific measurements. For PROMIS® PGH-7 and PGH-7 + 2, such validation and cross-cultural adaptation need to be performed. Considering the future directions in pediatric rheumatology, the large-scale implementation of PROMIS® PGH-7 and PGH-7 + 2 in JIA offers a particularly valuable opportunity. The PROMs reflect the patient perception of the chronic disease and allow to understand child’s opinions. The PROMs may provide an important element of the holistic medical care of patients with JIA and a standardized tool for clinical outcomes, monitoring disease severity and response to treatment.

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Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa

Cited by 20 publications

References 31 publications

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

Quality of life problems in children with juvenile idiopathic arthritis and its subtype associated with uveitis (literature review and own research)

Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice

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