Parents' Satisfaction with Juvenile Idiopathic Arthritis Care: Findings from a Cohort of Italian Children Using the JAMAR Questionnaire.

IF 2.4
Federica Romano, Precia Mombasi, Franco Garofalo, Nima Namarvari, Francesco Franco, Patrizia Defabianis, Giovanni Nicolao Berta
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Abstract

Background and Objectives: Despite recent advancements in treatment, children with juvenile idiopathic arthritis (JIA) continue to experience poor health-related quality of life, and data on patient and parent satisfaction with disease management remain limited. Thus, this cross-sectional study aimed to explore the factors influencing parental satisfaction with their child's JIA care, using the juvenile arthritis parent acceptable symptom state (JA-PASS). Materials and Methods: Parents of 63 children (43 females and 20 males; mean age 12.2 ± 3.7 years) diagnosed with JIA completed the Juvenile Arthritis Multidimensional Assessment Report (JAMAR). The study analyzed JAMAR responses, along with demographic data, disease duration and activity, and current medication use, to identify clinical factors that influence JA-PASS. Results: According to the JAMAR, 55.6% of parents expressed satisfaction with their child's current condition. In a multiple regression analysis, significant factors influencing JA-PASS included medication side effects (p = 0.033), current disease activity (p = 0.009), and the psychosocial well-being rating in the JAMAR questionnaire (p = 0.048). Conclusions: JA-PASS should be integrated into patient assessment protocols, as it provides valuable insight into parents' perceptions of disease progression and effectiveness of therapeutic interventions.

父母对青少年特发性关节炎护理的满意度:一组意大利儿童使用JAMAR问卷调查的结果。
背景和目的:尽管最近治疗取得了进展,但青少年特发性关节炎(JIA)儿童的健康相关生活质量仍然较差,患者和家长对疾病管理满意度的数据仍然有限。因此,本横断面研究旨在探讨影响家长对孩子JIA护理满意度的因素,采用青少年关节炎家长可接受症状状态(JA-PASS)。材料与方法:63例儿童家长,其中女43例,男20例;平均年龄12.2±3.7岁),完成青少年关节炎多维评估报告(JAMAR)。该研究分析了JAMAR反应、人口统计数据、疾病持续时间和活动以及当前药物使用情况,以确定影响JA-PASS的临床因素。结果:根据JAMAR, 55.6%的家长对孩子的现状表示满意。在多元回归分析中,影响JA-PASS的显著因素包括药物副作用(p = 0.033)、当前疾病活动性(p = 0.009)和JAMAR问卷中的心理社会健康评分(p = 0.048)。结论:JA-PASS应该整合到患者评估方案中,因为它为家长对疾病进展和治疗干预有效性的看法提供了有价值的见解。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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