Patient reported outcomes in brachial plexus birth injury: results from the iPLUTO world-wide consensus survey.

IF 2.1 4区 医学 Q1 REHABILITATION Disability and Rehabilitation Pub Date : 2024-11-01 Epub Date: 2024-01-04 DOI:10.1080/09638288.2023.2298708
Hazel Brown, Ruth van der Looven, Emily S Ho, Willem Pondaag
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Abstract

Purpose: Brachial plexus birth injuries (BPBI) can have lifelong effects on the development and functional use of the upper extremity. Currently there is no agreement with regards to what patient-reported outcome (PRO) measures should be used. Therefore, the ability to compare the effects of treatment between individuals and institutions is challenging. This study aimed to achieve consensus among clinicians on the use of PRO measures within this patient group to allow for improved comparison of treatments and outcomes in the future.

Materials and methods: Online, a 3 round Delphi survey was completed by 35 international multi-disciplinary specialist centers.

Results: All respondents (100%) agreed that PRO measures are useful for clinical evaluation and patient treatment. None of the outcome measures scored >75% agreement for ability to assess responsiveness and current state in children with BPBI as most outcome measures were judged as not specific for BPBI. Additionally, participant centers were asked their perspective on the best available PRO option for each of the 3 categories: functional use of the upper limb, quality of life and pain. This resulted in endorsement by the participant centers of the Brachial Plexus Outcome Measure - Self-Evaluation, the Pediatric Quality of Life Inventory, and Visual Analogue Scale/Brief Pain Inventory respectively.

Conclusion: International specialists in BPBI agree that PRO measures are important to use both clinically and in research in children aged 5 years and above.

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臂丛神经产伤的患者报告结果:iPLUTO 全球共识调查的结果。
目的:臂丛神经产伤(BPBI)会对上肢的发育和功能使用产生终生影响。目前,对于应采用何种患者报告结果 (PRO) 测量方法还没有达成一致意见。因此,比较个人和机构之间的治疗效果具有挑战性。本研究旨在让临床医生就该患者群体中PRO测量方法的使用达成共识,以便将来更好地比较治疗方法和结果:35家国际多学科专业中心完成了3轮德尔菲在线调查:结果:所有受访者(100%)都认为PRO测量对临床评估和患者治疗有用。在评估 BPBI 患儿的反应能力和当前状态方面,没有一项结果测量的同意率超过 75%,因为大多数结果测量被认为不是专门针对 BPBI 的。此外,参与中心还被问及他们对上肢功能使用、生活质量和疼痛这三个类别中现有的最佳PRO选项的看法。结果,参与中心分别认可了臂丛神经结果测量--自我评价、儿科生活质量量表和视觉模拟量表/简易疼痛量表:国际臂丛神经损伤专家一致认为,PRO 测量方法对于 5 岁及以上儿童的临床和研究都非常重要。
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来源期刊
Disability and Rehabilitation
Disability and Rehabilitation 医学-康复医学
CiteScore
5.00
自引率
9.10%
发文量
415
审稿时长
3-6 weeks
期刊介绍: Disability and Rehabilitation along with Disability and Rehabilitation: Assistive Technology are international multidisciplinary journals which seek to encourage a better understanding of all aspects of disability and to promote rehabilitation science, practice and policy aspects of the rehabilitation process.
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