The quality of life assessment in children with juvenile idiopathic arthritis- comparison of PROMIS® generic and disease-specific cut-off points: a pilot study.
Justyna Młyńczyk, Paweł Abramowicz, Izabela Bernacka-Kusznierko, Jerzy Konstantynowicz
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引用次数: 0
Abstract
Objectives: Decreased quality of life (QoL) is a significant complication of most rheumatic conditions in adults, whereas data on health-related quality of life (HRQoL) in children with juvenile idiopathic arthritis (JIA) are limited. Patient-Reported Outcomes Measurement Information System® (PROMIS® ) instruments assessing quality of life (QoL) components can be scored using disease-specific severity thresholds. Our study aimed to compare the results of generic and one of the JIA-specific scorings regarding PROMIS® Pediatric Mobility, Pain Interference, and Fatigue questionnaires, introduce PROMIS® Pediatric Global Health 7 questionnaire as a valuable method to assess QoL specifically in patients with JIA and determine differences in self-reported QoL in juvenile idiopathic arthritis (JIA) patients and their healthy peers in the Polish population.
Methods: In this single-center cross-sectional study, four self-reported questionnaires derived from the PROMIS® Pediatric Item Bank (Global Health, Pain Interference, Fatigue, Mobility) were administered to 52 patients with JIA (8-17 years; mean 13.2 ± 2.9; girls 59.6%) and 101 age-matched healthy controls. Questionnaires were scored based on generic or JIA-specific cut-off points.
Results: Regardless of the domain (PROMIS® Pain Interference, Fatigue, or Mobility), JIA patients assigned by generic cut-off points to a more severe outcome were classified into milder outcomes when cut-off points for JIA were used. The usefulness of the PROMIS® Pediatric Global Health 7 questionnaire was evidenced in children with JIA. No significant differences were found in QoL assessment between children with JIA and healthy children; however, self-reported impaired mobility was more prevalent in patients with JIA. A negative correlation was found between overall QoL and the assessment of three domains: pain, fatigue, and mobility impairment.
Conclusions: Our study underscores the importance of JIA-specific scoring in clinical practice. While more research is needed to establish a single disease-specific scoring, our findings provide valuable insights into the negative influence of pain, fatigue, and mobility impairment on QoL in JIA. These results have the potential to significantly impact patient care and improve the health-related quality of life in children with JIA.
期刊介绍：
RHEUMATOLOGY INTERNATIONAL is an independent journal reflecting world-wide progress in the research, diagnosis and treatment of the various rheumatic diseases. It is designed to serve researchers and clinicians in the field of rheumatology.
RHEUMATOLOGY INTERNATIONAL will cover all modern trends in clinical research as well as in the management of rheumatic diseases. Special emphasis will be given to public health issues related to rheumatic diseases, applying rheumatology research to clinical practice, epidemiology of rheumatic diseases, diagnostic tests for rheumatic diseases, patient reported outcomes (PROs) in rheumatology and evidence on education of rheumatology. Contributions to these topics will appear in the form of original publications, short communications, editorials, and reviews. "Letters to the editor" will be welcome as an enhancement to discussion. Basic science research, including in vitro or animal studies, is discouraged to submit, as we will only review studies on humans with an epidemological or clinical perspective. Case reports without a proper review of the literatura (Case-based Reviews) will not be published. Every effort will be made to ensure speed of publication while maintaining a high standard of contents and production.
Manuscripts submitted for publication must contain a statement to the effect that all human studies have been reviewed by the appropriate ethics committee and have therefore been performed in accordance with the ethical standards laid down in an appropriate version of the 1964 Declaration of Helsinki. It should also be stated clearly in the text that all persons gave their informed consent prior to their inclusion in the study. Details that might disclose the identity of the subjects under study should be omitted.
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