Wishes and needs of ALS patients and medical professionals regarding assistive devices
Hein Lucassen (ET-BDDP), Gabriëlle Tuijthof (ET-BDDP), Malte Asseln (ET-BDDP), Erik Prinsen (Roessingh Research & Development)
Abstract
In Europe, around 40,000 individuals are diagnosed with Amyotrophic Lateral Sclerosis (ALS)
[1]. ALS is a progressive disease leading to loss of muscle strength and control, limiting patients’ independence and ability to perform activities of daily living. Assistive devices can help people with ALS; however, their use is often time limited due to the relative fast disease progression. This highlights the need for novel assistive technologies that adapts to the decreasing muscle strength and thereby context of use. Literature lacks information about requirements and wishes of ALS patients regarding assistive technology for the upper extremities. Thus, the goal was to execute focus group sessions involving ALS patients, their first of kin and medical professionals to identify these.
Currently, two focus groups have been conducted, recorded and transcribed covering the ‘day-in-a-life’ method
[2] and statements to provoke discussion. Transcripts were analysed and coded, yielding the themes: requirements and wishes regarding assistive technology, change in patients’ needs, and characteristics of ALS patients. Additionally, activities were categorized according to basic activities of daily living and other (e.g. hobbies).
Results indicate as ALS progresses, the need for patients shifts from maintaining independence in activities, to communication assistance. Medical professionals state that ALS patients with cervical onset, retaining hand and finger function, but with limited arm function, benefit lowest from existing assistive technology. Important activities to perform independently are related to hobbies as they provide meaning. Patients indicate not to use assistive devices, because they are not easy to use or are too wide for a door.
[1] L. van den Berg, “Epidemiologie van ALS - ALS Centrum.” Accessed: Sep. 13, 2023. [Online]. Available: https://www.als-centrum.nl/kennisplatform/epidemiologie-van-als/
[2] M. del Rio Carral, “Focusing on ‘A Day in the Life’: An Activity-Based Method for the Qualitative Analysis of Psychological Phenomena,” Qual Res Psychol, vol. 11, no. 3, pp. 298–315, 2014, doi: 10.1080/14780887.2014.902525.