High-tech communication devices, such as eye-tracking computer systems (ETCS), improve quality of life and enable caregiver-independent interaction of severely disabled patients with amyotrophic lateral sclerosis (ALS).
However, technical aspects and patients’ cognitive impairment are among the factors still limiting their use.
The review study titled “Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis,” appeared in the journal Frontiers in Neurology.
Approximately 80-95% of patients with ALS develop a speech disorder called dysarthria, which limits their ability to communicate.
Intense communication is key to meet patients’ needs and guide decision-making in medical care, so using high-tech augmentative and alternative communication (HT-AAC) — electronic devices that store and retrieve messages — optimizes care and quality of life for severely disabled patients and their caregivers.
HT-AAC includes devices such as tablets or touchpads and require minimal or no head or limb movement. An important feature is the possibility of maintaining the emotional connection within families, as reported by spouses of ALS patients. These devices also allow psychotherapy in severely disabled individuals.
The best studied devices are ECTS, which allow the user to control the cursor by eye movement. These systems use infrared-sensitive cameras and are associated with high acceptance and user satisfaction in both ALS and traumatic brain injury patients.
Eye-tracking computer systems are used for several activities, such as face-to-face communication, email contact, and internet access. Among reported reasons for ALS patients to use these systems are maintenance of communication, participation in community, and employment.
These devices have been associated with greater quality of life in ALS patients who have developed locked-in syndrome (LIS) — complete paralysis of all voluntary muscles except those controlling eye movement — mainly by enabling patients to have social activities and preserving their autonomy.
ETCS also improve the ability to perform neuropsychological tests — often compromised in severely impaired patients — and reduce the burden of caregivers.
Studies also suggested that using high-tech augmentative and alternative communication is crucial for self-determination of care and may change patients’ decisions regarding life-prolonging measures.
Reported discrepancies in the evaluation of patients’ quality of life comparing their own assessments to those of their caregivers make the ability to communicate especially relevant for end-of-life-decisions, the authors noted.
However, a number of factors may limit the use of ECTS in patients with ALS and other conditions that affect communication.
Limitations related to the patient include cognitive impairment — such as language dysfunction or impaired memory and reasoning — as well as ophthalmologic diseases and eye movement dysfunctions.
Glaucoma, nystagmus (uncontrolled eye movements) and deformations of the cornea are among the eye problems limiting ETCS.
Poor facial recognition of emotions such as anger, sadness, or disgust as well as reduced ability to correctly respond to them may also affect use of ETCS. Apathy and depression are frequent in ALS patients and are additional obstacles to communication.
As diverse types of cognitive and behavioral disturbances may affect ALS patients, the authors support the importance of their clear diagnosis throughout disease course, which may also help caregivers understand the patient’s changed ability and willingness to communicate.
Acceptance of ETCS may be affected by factors including a preference for face-to-face-communication and using the patient’s own voice in those able to communicate via speech. Low-tech AAC — not needing electronics — may be preferential to interact with familiar partners, while high-tech AAC may be needed for communication with less familiar partners.
Factors such as age, education, and computer experience may also impact the acceptance of ETCS.
The clinicians’ potential lack of awareness of HT-AAC devices and their possibilities is another challenge. Issues with funding and availability, including the time-consuming application process in the U.S., as well the need to adapt devices to each patient and to train caregivers, may be obstacles to using high-tech communications.
Regarding factors related to the devices, insufficient accuracy of older versions, poor quality of the voice output and lack of sensitivity to emotion, as well as reduced usefulness in outdoor settings are relevant drawbacks.
An alternative to ETCS, especially for patients with eye movement dysfunctions and gaze fatigue, is called brain computer interfaces (BCIs). This strategy is based on the patient’s own brain activity, thereby not requiring motor control, and showed effectiveness in limited studies.
“They are therefore considered a promising communication tool for advanced ALS or LIS-patients,” the scientists wrote, particularly noninvasive systems.
However, cognitive and behavioral impairment may also affect this approach, they said, adding that existing BCI systems still cannot be used in standard palliative care of ALS patients.
As for future developments, the authors mentioned that head-mounted systems with built-in eye-tracking capabilities may become available, which would be more portable than current computer screen-bound systems and would allow patients to look directly at their communication partners.
Altogether, HT-AAC systems have “a high potential” to improve palliative care for ALS patients and also those with other neurological conditions affecting communication, such as traumatic brain injury or primary progressive aphasia, the investigators said.
“The consideration of HT-AAC interventions should be embedded as mandatory in multidisciplinary palliative care [in ALS],” they wrote.