Purpose: Amyotrophic Lateral Sclerosis (ALS) is a progressive disease leading to loss of muscle strength and control, and as such limiting patients' independence. Assistive devices can help individuals with ALS; however, their use by ALS patients is limited. To increase use rates, we expect that devices need to be tailored to ALS patients. The aim of this study was to identify wishes, requirements and values of ALS patients regarding assistive devices for the upper extremity through focus groups involving ALS patients, their relatives and medical professionals.

Methods and materials: Four focus groups were conducted, recorded and transcribed. Two focus groups with ALS patients and their relatives contained a "Day in a Life" and "Empathy map" method, while during two focus groups with medical professionals, "Day in the Life" method and "Provoking statements" were used. Activities mentioned were counted and categorized into "Daily activities" and "Elective activities".

Results: Qualitative analysis of transcripts yielded three themes: (1) ALS patients' considerations on use and wishes for assistive devices, (2) external factors influencing the use of assistive devices and (3) change in ALS patients' needs over time. In addition to maintaining independence in activities of daily living, the results highlight that retaining the ability to perform elective activities such as hobbies, is important. Moreover, there is a clear need for assistive devices designed for ALS patients with limited upper extremity strength, but who are not confined to a wheelchair.

Conclusion: These findings can guide the development of assistive devices tailored to the needs of ALS patients.

Keywords: Assistive device; activities of daily living; amyotrophic lateral sclerosis; design requirements; motor neuron disease; upper extremity.

目的：肌萎缩侧索硬化症（ALS）是一种进行性疾病，会导致肌肉力量和控制能力的丧失，从而限制患者的独立性。辅助设备可以帮助患有ALS的人，然而，这些设备在ALS患者中的使用受到限制。为了提高使用率，我们认为需要根据ALS患者的需求来定制这些设备。本研究旨在通过涉及ALS患者、他们的亲属及医疗专业人员的焦点小组讨论，确定关于上肢辅助设备的愿望、需求和价值观。

方法与材料：进行了四次焦点小组讨论，并进行了录音和转录。两个焦点小组包含患有ALS的人及其家属，使用了“一天的生活”和“同理心地图”的方法；而在另外两次针对医疗专业人员的焦点小组中，则运用了“一天的生活”方法以及“触发陈述”。所提及的活动被计数并分类为“日常活动”和“可选活动”。

结果：对转录文本进行定性分析得出了三个主题：(1) ALS患者使用辅助设备的考虑及愿望；(2) 影响辅助设备使用的外部因素；(3) 随时间变化的ALS患者的需要。除了维持日常生活的独立性，研究还强调保留诸如爱好等可选活动的能力也很重要。此外，显然存在一种需求：为那些上肢力量受限但又不局限于轮椅的ALS患者设计专用的辅助设备。

结论：这些发现可以指导针对ALS患者需要开发定制化的辅助设备。

关键词：辅助设备；日常生活活动；肌萎缩侧索硬化症；设计需求；运动神经元疾病；上肢。

简易语言摘要

本研究为开发者提供了宝贵的见解，以制定符合ALS患者需求的辅助技术解决方案。新的设备应当针对那些上肢力量受限但又不局限于轮椅的ALS患者进行定制设计。提高设备使用率不仅可以通过关注日常生活活动来实现，还可以通过关注可选活动（如爱好）来达成。