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评估iPeer2Peer项目对青少年特发性关节炎青少年的影响:一项混合方法随机对照试验。

Assessing the impact of the iPeer2Peer program for adolescents with juvenile idiopathic arthritis: a mixed-methods randomized controlled trial.

作者信息

Nishat Fareha, Kelenc Lauren, Berard Roberta, Duffy Ciaran, Feldman Brian, Forgeron Paula, Huber Adam M, Luca Nadia, Schmeling Heinrike, Spiegel Lynn, Tucker Lori, Watanabe-Duffy Karen, Killackey Tieghan, Lalloo Chitra, Wiles Brittany, Nair Anya, Olaizola Sofia, McDermott Brenna, Tavangar Farideh, Kohut Sara Ahola, Stinson Jennifer N

机构信息

Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, 686 Bay Street, Room 06.9715, Toronto, ON, M5G 0A4, Canada.

Division of Rheumatology, Children's Hospital, London Health Sciences Centre, London, ON, Canada.

出版信息

Pediatr Rheumatol Online J. 2024 Dec 27;22(1):109. doi: 10.1186/s12969-024-01052-5.

Abstract

BACKGROUND

Juvenile Idiopathic Arthritis (JIA) is a chronic pediatric illness, whereby youth experience physical, emotional and psychosocial challenges that result in reduced health related quality of life (HRQL). Peer mentoring has been shown to improve disease self-management in adults with chronic conditions, with mixed results in younger populations. Building on our pilot work - which supported the feasibility and initial effectiveness of the iPeer2Peer program - the objective of this study was to assess the clinical effectiveness of the program in youth with JIA through a waitlist randomized controlled trial.

METHODS

Eighty-one youth (aged 12-18) were randomized to the intervention group and matched with trained peer mentors (18-25 years; successfully managing their JIA), completing of up to ten 30-min video calls over a 15-week period. Eighty-three youth in the control group received standard care. Outcome assessments occurred at enrollment, 15 weeks post randomization and 6-months post randomization. The primary outcome was self-management, measured using the TRANSITION-Q. Secondary outcomes were HRQL, pain, emotional distress, disease knowledge, self-efficacy, and perceived social support. These were assessed using linear mixed effects models. Content analysis of semi-structured interviews and focus groups was used to assess satisfaction with the program with mentors and mentees upon study completion.

RESULTS

In total, 164 youth (mean age 14.4 ± 1.9 years, 78% female) were randomized to the study. The proposed sample size was not reached due to challenges in recruitment, likely impacted by the COVID-19 pandemic. The iPeer2Peer program did not show significant improvement in self-management (p = 0.7), or any of the secondary outcomes. Three key categories emerged from content analysis: (1) Fulfillment and Support Through Shared Experience, (2) Enhancing Program Delivery and (3) Strategies to Boost Engagement. These findings highlight that mentees valued the ability to converse with mentors who empathized with their disease experience, while mentors found it fulfilling to support mentees, and noted that they could have benefited from this type of support themselves.

CONCLUSION

While the iPeer2Peer did not result insignificant changes in clinical outcomes, both mentors and mentees were satisfied with the program and felt that mentorship provided real-world benefits for disease management and overall wellbeing.

TRIAL REGISTRATION

ClinicalTrials.gov, NCT03116763. Registered 31, March 2017, https://www.

CLINICALTRIALS

gov/study/NCT03116763.

摘要

背景

青少年特发性关节炎(JIA)是一种慢性儿科疾病,患病青少年在身体、情感和心理社会方面面临挑战,导致健康相关生活质量(HRQL)下降。同伴辅导已被证明可改善患有慢性疾病的成年人的疾病自我管理能力,但在较年轻人群中的效果不一。基于我们的试点工作——该工作支持了iPeer2Peer项目的可行性和初步有效性——本研究的目的是通过一项等待名单随机对照试验评估该项目对JIA青少年的临床效果。

方法

81名青少年(年龄在12 - 18岁之间)被随机分配到干预组,并与经过培训的同伴辅导员(年龄在18 - 25岁之间;成功管理自己的JIA)配对,在15周内完成多达十次30分钟的视频通话。对照组的83名青少年接受标准护理。在入组时、随机分组后15周和随机分组后6个月进行结果评估。主要结果是自我管理,使用TRANSITION - Q进行测量。次要结果包括HRQL、疼痛、情绪困扰、疾病知识、自我效能感和感知到的社会支持。使用线性混合效应模型对这些结果进行评估。在研究结束时,通过对半结构化访谈和焦点小组的内容分析来评估导师和学员对该项目的满意度。

结果

共有164名青少年(平均年龄14.4±1.9岁,78%为女性)被随机分配到该研究中。由于招募方面的挑战,未达到提议的样本量,这可能受到了COVID - 19大流行的影响。iPeer2Peer项目在自我管理方面(p = 0.7)或任何次要结果方面均未显示出显著改善。内容分析出现了三个关键类别:(1)通过共同经历实现满足感和获得支持,(2)加强项目实施,(3)提高参与度的策略。这些发现突出表明,学员重视与能够感同身受其疾病经历的导师交谈的能力,而导师则认为支持学员很有意义,并指出他们自己也可能从这种支持中受益。

结论

虽然iPeer2Peer项目在临床结果方面没有产生显著变化,但导师和学员都对该项目感到满意,并认为同伴辅导为疾病管理和整体幸福感带来了实际益处。

试验注册

ClinicalTrials.gov,NCT03116763。于2017年3月31日注册,https://www.CLINICALTRIALS.gov/study/NCT03116763。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/580e/11674074/ca43de4b4c71/12969_2024_1052_Fig1_HTML.jpg

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