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.

Efficacy of different interaction devices using non-immersive virtual tasks in individuals with Amyotrophic Lateral Sclerosis: a cross-sectional randomized trial

“…Other approaches include using different hardware devices for interacting with virtual tasks, such as a standard computer mouse for writing in a computational activity [18], and eye tracking technology to facilitate social interaction [19]. The evidence highlights that these types of devices can be used to preserve mental autonomy, influence psychological well-being and may modify disease course and influence end-of-life-decisions in severely affected patients with ALS [20] and those with locked-in syndrome [21]. The type of interaction device is important as it may affect the ease of engagement and use of VR.…”

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

“…Irrespective of its causes, the contradictory assessment of patients' QoL by patients themselves and caregivers may have tremendous consequences on end-of-life-decisions and thus makes it essential to enable patients to communicate even complex utterances independently of their next-of kin or caregivers. Actually, LIS-ALS-patients themselves confirm that they are able to do so by means of their own ETCS but not without the device ( 37 , 44 ). It is indispensable that patients' wishes concerning life-prolonging measures are not undermined.…”

“…On the side of the caretaker, this can mean to correctly interpret the patient's unsatisfying (e.g., diminished or non-empathic) communicative behavior, this is to say as a consequence of the disease, which can be relieving. Discussed findings of rejection of ETCS devices by family members and their higher burden after the patient's supply with the communication device ( 37 , 44 ) support this idea. On side of the caretaker and the attending physicians, drawing the right conclusions might also mean to decide to limit life-prolonging measures.…”

“…Evaluation studies of HT-AAC-use show that once a functioning ETCS could be established, patients use it for several hours each day and report a high user satisfaction, preservation of communicative abilities and subjective indispensability of the device ( 34 , 37 ). Interestingly, the worse patients' clinical conditions, the higher seems to be their acceptance of HT-AAC ( 38 ).…”

“…This was possibly the case for one patient in a study by Linse et al ( 44 ), in which the family returned the ETCS without stating reasons and despite it was working well and the patient expressed the wish to use it. Evaluating the perceived usefulness of ETCS, next of kin also reported some critical issues, e.g., an increased burden since patients started to use the ETCS ( 37 ). Reasons for this higher burden need to be clarified.…”