Rheumatology (Oxford, England) · 2026
Introducing a parent-centred composite disease activity score for remote monitoring in juvenile dermatomyositis.
СтатьяМногоцентровое исследованиеВалидационное исследованиеНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Tarantola Letizia, Rebollo-Giménez Ana Isabel, Sciutto Alessia, Naddei Roberta, Varnier Giulia Camilla, Pilkington Clarissa, Maillard Sue, Civino Adele, Tsitsami Elena, de Inocencio Jaime, Jelusic Marija, Vojinovic Jelena, Espada Graciela, Makay Balahan, Katsicas Maria Martha, Pratsidou-Gertsi Polixeni, Lazarevic Dragana, Rao Anand Prahalad, Consolaro Alessandro, Pistorio Angela, Ravelli Angelo, Rosina Silvia
Аннотация
OBJECTIVES: The objective of this study was to develop and test a composite DAS for JDM solely based on parent-reported outcomes (PROs).
METHODS: The parent JDM Activity Index (ParJDMAI) includes the following four PROs: (1) global assessment of disease activity; (2) assessment of fatigue; (3) assessment of muscle disease activity; (4) assessment of skin disease activity. Each item is weighted on a 0-10 scale, which yields a total score ranging from 0 to 40. Validation procedures were conducted on a multicentre sample of 254 patients with JDM according to the OMERACT filter for outcome measures in rheumatology.
RESULTS: The ParJDMAI is short and simple, and is quick, taking <10 minutes to complete and score, which makes it practical for use in standard clinical care. In validation analyses, the tool demonstrated good construct validity, satisfactory internal consistency (Cronbach's alpha 0.86) and structure (with unambiguous identification of one factor with eigenvalue 2.9 on exploratory factor analysis), strong ability to discriminate between physician-estimated disease activity states (P < 0.001), and fair responsiveness to clinically important change over time (standardized response mean 0.8 among patients judged as improved by the parents). The ParJDMAI correlated strongly with physician-centred measures of disease activity.
CONCLUSION: The ParJDMAI was found to be feasible and to possess good measurement properties. It also proved to potentially serve as a surrogate for physicians' evaluations. Completion of the ParJDMAI through digital technologies may provide a reliable and pragmatic approach for building a remote patient-monitoring program.
METHODS: The parent JDM Activity Index (ParJDMAI) includes the following four PROs: (1) global assessment of disease activity; (2) assessment of fatigue; (3) assessment of muscle disease activity; (4) assessment of skin disease activity. Each item is weighted on a 0-10 scale, which yields a total score ranging from 0 to 40. Validation procedures were conducted on a multicentre sample of 254 patients with JDM according to the OMERACT filter for outcome measures in rheumatology.
RESULTS: The ParJDMAI is short and simple, and is quick, taking <10 minutes to complete and score, which makes it practical for use in standard clinical care. In validation analyses, the tool demonstrated good construct validity, satisfactory internal consistency (Cronbach's alpha 0.86) and structure (with unambiguous identification of one factor with eigenvalue 2.9 on exploratory factor analysis), strong ability to discriminate between physician-estimated disease activity states (P < 0.001), and fair responsiveness to clinically important change over time (standardized response mean 0.8 among patients judged as improved by the parents). The ParJDMAI correlated strongly with physician-centred measures of disease activity.
CONCLUSION: The ParJDMAI was found to be feasible and to possess good measurement properties. It also proved to potentially serve as a surrogate for physicians' evaluations. Completion of the ParJDMAI through digital technologies may provide a reliable and pragmatic approach for building a remote patient-monitoring program.