Usability of eyetracking computer systems and impact on psychological wellbeing in patients with advanced amyotrophic lateral sclerosis

Abstract

Restrictions in communicative abilities are well known in patients with amyotrophic lateral sclerosis (ALS), but only few approaches in terms of evaluation of supportive technologies have been made. We aimed to assess the use and perceived usability of eye-tracking computer devices (ETCS) of severely impacted patients with ALS in an independent, direct manner and relate it to psychological well-being. ETCS enable active communication and social participation in the quadriplegic and anarthric disease state. Therefore, ETCS-based versions of widely used psychosocial questionnaires (ADI-12, SeiQoL-DW, WHO-5) as well as structured questions on communicative functioning and ETCS usage were developed to assess ALS patients, their next of kin and professional caregivers. Eleven patients (ALSFRS-R: 5.3 ± 5.9; ALS duration: 6.5 ± 3.8 years, range 1‒12; 82% invasively ventilated), nine next of kin and 10 professional caregivers could be assessed. Patients reported a mean use of their personal ETCS of 9.1 h per d (range 0.5‒16), with a high user satisfaction, preservation of communicative abilities and subjective indispensability of the ETCS. ETCS use was associated with higher psychological well-being. Next of kin and professional caregivers also nominated some critical aspect, which remains to be clarified. Our results strengthen the evidence that preserved mental autonomy influences psychological well-being in ALS and might even modify disease course and end-of-life-decisions in ALS.

Keywords:

• Amyotrophic lateral sclerosis
• eye-tracking
• quality of life
• palliative care
• end-of-life decisions

Acknowledgements

We thank all subjects who participated in this study. We deeply appreciate the help of the patient network “ALS mobil e.V.”. The study was funded in part by a grant of the German Ministry for Education and Research (BMBF, 16SV5843), the Roland Ernst Stiftung Saxony, Germany, and by the “Innovationsausschusses des Gemeinsamen Bundesausschuss”, Germany (FKZ 01VSF16026).

Declaration of interest

W. R. and M. J.’s affiliation “Interactive Minds” is a provider of ETCS in the region of Dresden, Germany. On behalf of all authors, the corresponding author states that there are no further potential conflicts of interest.

Ethic committee approval

The study was approved by the local ethics committee of the Technische Universität Dresden (EK 393122012). All subjects gave informed consent in accordance with the Declaration of Helsinki. Patients had either previously signed consent personally while they were able to write, or a witness signed the consent in the presence of the patient, with the patient’s explicit consent via ETCS, after reading and explaining the protocol and giving the patient the opportunity to ask questions via ETCS.