膀胱可穿戴设备:利益相关者关于将多发性硬化症膀胱功能障碍干预措施推向 21 世纪的观点。

Q1 Nursing International journal of MS care Pub Date : 2024-10-21 eCollection Date: 2024-10-01 DOI:10.7224/1537-2073.2023-108
Valerie J Block, Leah McIntyre Née Wylie, Nikki Sisodia, Michelle E Van Kuiken, Anne M Suskind, Riley Bove
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引用次数: 0

摘要

背景:膀胱功能障碍(BD)在多发性硬化症(MS)患者中很常见,会减少患者对日常生活的参与。及早发现膀胱功能障碍,就能采取有效的预防性治疗,如盆底物理治疗。将神经技术与患者报告结果相结合来远程测量 BD,可以显著改善 BD 的监测和治疗。因此,我们描述了以人为本的设计过程中利益相关者参与组装膀胱可穿戴设备(WeB)套件的过程和结果:方法:4 位膀胱功能障碍严重程度不同的多发性硬化症患者和 5 位多发性硬化症临床/研究专家举行了 4 次虚拟会议。对市售的膀胱工具在评估、监测或治疗 BD 方面的能力进行了评分。评估采用健康信息技术可用性评估量表(实用性、可用性、可行性)。评分以个人和小组为单位进行:结果:在 11 种设备中,有 5 种设备的好感度、可用性和设备效用的平均得分高于 6 分(满分 10 分)。2 个得分最高(9/10)的设备被选为试点设备。其中一款设备用于测量膀胱尿量,报告排尿/漏尿的次数/频率;另一款设备则通过将应用程序上的游戏与阴道内传感器的生物反馈配对来指导盆底运动。我们发现了专家和患者对这些工具的理解存在重大差异,通过合作参与,我们对最初的工具评分进行了大幅修改:结论:这一过程强调了利益相关者的参与在数字工具选择中的关键作用,尤其是在骨盆功能等敏感领域。对所选工具的持续临床验证将产生一个经过验证、用户友好的 WeB 工具包,它能够填补我们在评估多发性硬化症患者 BD 治疗能力方面的空白,最终减少 BD 对生活质量的影响。
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Wearables for the Bladder: Stakeholder Perspectives on Moving Multiple Sclerosis Bladder Dysfunction Interventions Into the 21st Century.

Background: Bladder dysfunction (BD) is common in people with multiple sclerosis (MS) and can reduce participation in daily life. Detecting BD early allows for effective prevention-focused treatments such as pelvic floor physical therapy. Pairing neurotechnology with patient-reported outcomes to remotely measure BD could significantly improve monitoring and treatment of BD. Therefore, we describe the process and findings of stakeholder engagement from a human-centered design process to assemble a wearables for the bladder (WeB) kit.

Methods: Four people with MS with varying BD severity, and 5 MS clinical/research experts had 4 virtual meetings. Commercially available bladder tools were graded for ability to evaluate, monitor, or treat BD. The Health Information Technology Usability Evaluation Scale (utility, usability, feasibility) was used for evaluation. Scoring was performed individually and as a group.

Results: Of the 11 devices, 5 obtained mean scores of greater than 6 of 10 for likability, usability, and device utility. The 2 highest scoring (9/10) devices were selected for the pilot. One device measures bladder urine levels, reporting the number/frequency of voids/leaks; the other guides pelvic floor exercises by pairing games on an app with biofeedback from intravaginal sensors. We uncovered critical differences in experts' and patients' appreciation of the tools, and the collaborative engagement led to substantial revisions of initial tool scores.

Conclusions: This process underscores the critical role of stakeholder engagement in the selection of digital tools, especially in sensitive domains like pelvic function. Ongoing clinical validation of the selected tools will yield a validated, user-friendly WeB kit that is able to fill gaps in our ability to evaluate BD treatments in people with MS, ultimately reducing the impact of BD on quality of life.

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来源期刊
International journal of MS care
International journal of MS care Nursing-Advanced and Specialized Nursing
CiteScore
3.00
自引率
0.00%
发文量
40
期刊最新文献
Impact of Fingolimod Discontinuation Strategy on Recurrence of Disease Activity in Individuals With Multiple Sclerosis. Expanding the Connection Between Cognition and Illness Intrusiveness in Multiple Sclerosis. Cognitive Function in Frail Older Adults With Multiple Sclerosis: An Exploratory Study Using Secondary Data Analysis. Exploring the Complexity of Falls in People With Multiple Sclerosis: A Qualitative Study. Reasons for Hospital Admission in Individuals With Multiple Sclerosis.
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