Abstract
Background. The Myositis Discovery Programme (MDP) based in Perth, West¬ern Australia works closely with consumers to provide direction and guidance in their research endeavours. Together with the Myositis Association Australia, a Myositis Research Consumer Panel was established. Comments from members of the Panel during meetings revealed that they felt they learn more about Assis¬tive Technology (AT) from their peers than from health professionals. As a result of this discussion, a study was initiated to investigate usage and perceived value of AT used by people with myositis.
Methods. Based on literature review, therapist advice and input from the Myositis Research Consumer Panel, an online survey (Qualtrics) was designed to capture information regarding AT use and value, as well as information regarding demo¬graphics, health status and quality of life, including via validated questionnaires. Members of the Myositis Association Australia and patients of the MDP (Perth, Australia) were invited to participate. Participants were asked to rate the ‘useful¬ness’ of items of AT that they use and were asked to complete health status informa-tion via the Neuromuscular Symptom Score (NSS) as well as well-being status via the ‘Patient Health Questionnaire (PHQ-9)’ and ‘Personal Wellbeing Index (PWI)’.
Results. 102 myositis patients completed the survey, with majority of respond¬ents diagnosed with IBM (n=80). 100 participants owned at least one AT device with an average of 14 items owned. The most used assistive devices pertained to bathroom and mobility. Participants rated AT devices relating to environmental support, sleeping, seating and body support as most useful. There was a correla¬tion between disease severity and numbers of devices used. Additionally, it was found that most people with myositis self-funded their own AT. It was hypoth¬esised that items which aided mobility would be most valued, however this was not found to be the case, with items that help patients to retain their independence rather than simply provide physical assistance (e.g. smart phones, tablets, modi¬fied driving controls) rated most valuable.
Conclusions. As expected, AT device usage is high among people with myosi¬tis, particularly those with more severe or disabling disease. Most items were deemed to be of value, however, AT devices that support people with myositis to retain independence were found to be of higher value than AT devices that provide physical support alone.