Session Information
Date: Monday, June 20, 2016
Session Title: Quality of life/caregiver burden in movement disorders
Session Time: 12:30pm-2:00pm
Location: Exhibit Hall located in Hall B, Level 2
Objective: To assess psychosocial functioning in advanced ALS in a fully independent manner.
Background: ALS is a fatal motor neuron disease, with progressive paralysis, dysarthria, and respiratory disabilities. Eye tracking based computer systems (ETCS) facilitate communication in advanced quadriplegic and anarthric disease state. The impact of ALS on wellbeing is controversial, with patients showing surprisingly preserved psychological functioning in some studies. Quality of Life, depression and the impact of communicative functioning, especially ETCS usage in the late disease state has not yet been investigated in a direct, fully independent manner, using ETCS.
Methods: ETCS-based versions of widely used psychosocial questionnaires (ACSA, ADI-12, SeiQoL-DW, WHO-5) as well as a new questionnaire on communicative functioning were developed. 30 ALS-patients in an advanced disease state were screened, of whom 11 could complete study procedures (ALS-FRS-R: 5.3±5.9; ALS duration: 6.5±3.8 y, range 1-12; 82% invasively ventilated), including an ETCS-based semi structured interview on sociodemographic data, usage of ETCS and psychosocial questionnaires. Additionally, 9 family and 10 professional caregivers were assessed.
Results: An ETCS-based version of the TMT showed no relevant executive impairment and high eye tracking accuracy. On average patients used ETCS for 22.3 months (range 1-74) with a mean daily usage of 9.1 hours (range 0.5-16), and rated it as highly usable and indispensable. More intensive use was associated with longer ALS duration and better psychological wellbeing. Patients reported high communicative abilities, while their supposition without the ETCS was significantly worse. Depression rates were moderate and comparable for patients and family caregivers (ADI-12: 19.7±5.4 vs. 19.2±6.0, p=.824; WHO-5: 63.6±33.4 vs. 63.8±19.5, p=.766). Patients scored higher in the SeiQoL-DW than family caregivers (81.3±4.8 vs. 62.8±19.5; p=.020) and higher than caregivers rated for them (54.2±29.6; p=.027), nominating mainly social activities as important areas of life.
Conclusions: Direct assessment of psychosocial measures using ETCS is feasible in the advanced state of ALS. Even severely impacted patients can show good psychological wellbeing, with a potentially high impact of ETCS, enabling communication, participation and psychological autonomy.
To cite this abstract in AMA style:
K. Linse, W. Rüger, M. Joos, H. Schmitz-Peiffer, A. Storch, A. Hermann. Direct assessment of psychosocial measures using eye tracking technology in advanced ALS – Can preserved autonomy and psychological wellbeing modify disease course? [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/direct-assessment-of-psychosocial-measures-using-eye-tracking-technology-in-advanced-als-can-preserved-autonomy-and-psychological-wellbeing-modify-disease-course/. Accessed June 14, 2025.« Back to 2016 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/direct-assessment-of-psychosocial-measures-using-eye-tracking-technology-in-advanced-als-can-preserved-autonomy-and-psychological-wellbeing-modify-disease-course/