Consumer-driven evaluation of assistive technology usage and perceived value in people with myositis in Australia

IF 1.6 4区医学 Q2 REHABILITATION

Australian Occupational Therapy Journal Pub Date : 2024-04-30 DOI:10.1111/1440-1630.12954

Melanie Cusso, Ian Cooper, Kelly Beer, Chiara Naseri, Simon Garbellini, Althea Doverty, Geoff Corcoran, Merrilee Needham

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引用次数: 0

Abstract

Introduction

Idiopathic inflammatory myopathies (known as ‘myositis’) are a group of rare sporadic inflammatory muscle disorders that significantly impact function and quality of life. There are no standardised approaches in the use of assistive technologies in myositis. This study was initiated to investigate current use and perceived value of assistive technology (AT) by people with myositis.

Methods

A cross-sectional online questionnaire (Qualtrics) was designed to capture information regarding AT use and perceived value and demographic information from people with myositis across Australia. The questionnaire was distributed via the Myositis Association of Australia and specialist myositis clinics. Participants were asked to identify which AT items they owned and how frequently the item was used and to rate the ‘usefulness’ of those items. Information was also collected on participants' engagement with health professionals regarding assistive technologies.

Consumer and community involvement

Consumer involvement via the Myositis Research Consumer Panel identified a knowledge gap regarding AT. The questionnaire was designed with consumer input and review.

Results

One hundred two people (102) with myositis completed the questionnaire. One hundred (100) participants owned at least one AT device, with a median of 12.5 items and a maximum of 65 items. The most used devices were associated with toileting, personal care and mobility. Participants rated AT devices relating to environmental support, sleeping, seating and body support as most useful. There was a positive correlation between disease duration and number of devices used (r₂ = 0.248, p = 0.012). Majority of participants (75.5%) were interested in talking to health professionals about AT; however, only 50% had done so.

Conclusion

AT device usage is high among people with myositis, with most items deemed to be useful. Greater occupational therapy input into recommendations and potential funding options may improve knowledge and access to AT.

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以消费者为导向，对澳大利亚肌炎患者的辅助技术使用情况和感知价值进行评估

导言特发性炎症性肌病（又称 "肌炎"）是一组罕见的散发性炎症性肌肉疾病，严重影响患者的功能和生活质量。肌炎患者在使用辅助技术方面还没有标准化的方法。本研究旨在调查肌炎患者目前对辅助技术（AT）的使用情况和感知价值。研究方法设计了一份横向在线问卷（Qualtrics），以收集澳大利亚各地肌炎患者对辅助技术的使用情况、感知价值和人口统计信息。问卷通过澳大利亚肌炎协会和肌炎专科诊所发放。问卷要求参与者确认他们拥有哪些辅助器具，使用频率如何，并对这些器具的 "有用性 "进行评分。通过肌炎研究消费者小组（Myositis Research Consumer Panel）的消费者参与，我们还收集了参与者与医疗专业人员就辅助技术进行接触的信息。调查问卷的设计听取了消费者的意见并进行了审核。结果 102 位肌炎患者完成了调查问卷。100名参与者至少拥有一件辅助器具，中位数为12.5件，最多为65件。使用最多的辅助器具与如厕、个人护理和移动有关。参与者认为与环境支持、睡眠、座椅和身体支持有关的辅助器具最有用。病程与使用的辅助器具数量呈正相关（r2 = 0.248，p = 0.012）。大多数参与者（75.5%）有兴趣与医护人员讨论辅助器具问题，但只有 50%的人这样做了。职业疗法对建议和潜在资助方案的更多投入可能会提高人们对辅助器具的了解和使用率。

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来源期刊

Australian Occupational Therapy Journal 医学-康复医学

CiteScore

2.80

自引率

16.70%

发文量

审稿时长

6-12 weeks

期刊介绍： The Australian Occupational Therapy Journal is a leading international peer reviewed publication presenting influential, high quality innovative scholarship and research relevant to occupational therapy. The aim of the journal is to be a leader in the dissemination of scholarship and evidence to substantiate, influence and shape policy and occupational therapy practice locally and globally. The journal publishes empirical studies, theoretical papers, and reviews. Preference will be given to manuscripts that have a sound theoretical basis, methodological rigour with sufficient scope and scale to make important new contributions to the occupational therapy body of knowledge. AOTJ does not publish protocols for any study design The journal will consider multidisciplinary or interprofessional studies that include occupational therapy, occupational therapists or occupational therapy students, so long as ‘key points’ highlight the specific implications for occupational therapy, occupational therapists and/or occupational therapy students and/or consumers.