Chronic neurological disorders in their advanced phase are characterized by a progressive loss of mobility (use of upper and lower limbs), speech and social life. Some of these pathologies, such as amyotrophic lateral sclerosis and multiple sclerosis, are paradigmatic of these deficits. High technology communication instruments, such as eye tracking, can be an extremely important possibility to reintroduce these patients in their family and social life, in particular when they suffer severe disability. This paper reports and describes the results of an ongoing experimentation about Eye Tracking impact on the quality of life of amyotrophic lateral sclerosis patients. The aim of the experimentation is to evaluate if and when eye tracking technologies have a positive impact on patients' live

And Vignola, A.

Calvo, A.

Castellina, Emiliano

Chiò, A.

Corno, Fulvio

Farinetti, Laura

Ghiglione, P.

Pasian, V.

English

PORTO Publications Open Repository TOrino

Eye tracking impact on Quality-of-life of ALS
Patients
Andrea Calvo1, Adriano Chio`1, Emiliano Castellina2, Fulvio Corno2, Laura
Farinetti2, Paolo Ghiglione2, Valentina Pasian1, and Alessandro Vignola1
1 ALS centre ”Molinette” hospital, Torino, Italy
2 Politecnico di Torino, Torino, Italy
Abstract. Chronic neurological disorders in their advanced phase are
characterized by a progressive loss of mobility (use of upper and lower
limbs), speech and social life. Some of these pathologies, such as amy-
otrophic lateral sclerosis and multiple sclerosis, are paradigmatic of these
deficits. High technology communication instruments, such as eye track-
ing, can be an extremely important possibility to reintroduce these pa-
tients in their family and social life, in particular when they suffer severe
disability.
This paper reports and describes the results of an ongoing experimen-
tation about Eye Tracking impact on the quality of life of amyotrophic
lateral sclerosis patients. The aim of the experimentation is to evaluate
if and when eye tracking technologies have a positive impact on patients’
lives.
1 Introduction
Persons with neurodegenerative diseases are affected by several kinds of symp-
toms and problems during the development of the illness (sometimes over a
long span of years), that have a severe impact over the quality of life. In ad-
vanced phases, amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS)
are characterized by the complete loss of communication abilities, even with
common augmentative/substitutive systems, due to the total loss of movements
of limbs and neck and immobilization, with a total dependence on other persons
for the common activities of daily life.
A great deal of literature highlights the various aspects related to the care
and to improving the quality of life of these patients, through palliative care.
In palliative care, it is fundamental to control pain, symptoms, and social, psy-
chological and spiritual problems. They aim at improving the quality of life
of patients and their families. This type of care must adapt, day after day, to
the needs of the patients and of their family. Every treatment needs to be re-
examined continuously. From the literature we find that home is the ideal place
where to apply palliative care. The efforts to improve (or to allow) an effective
communication in ALS belong fully to the topic of palliative care. Patients with
very severe disability, thanks to communication tools, may have chances to re-
enter their social and family life [1]. Such systems may allow ALS or MS patients
to gain autonomy, even if limited, in their personal life choices.
The potential of eye tracking in ALS is extremely high, since these patients
retain their full cognitive capabilities, and while paralysis progresses, in most
cases eye movements are still controllable.
There are few research results on using eye trackers with ALS or MS patients.
A former study [6] identified some fundamental requirements for Augmentative
and Alternative Communication (AAC) systems in these patients: communi-
cating instructions, achieve the satisfaction of their needs, clarify their needs,
having an ”affective” communication and transfer informations. The results of
such research, even if they offer significant information, are limited by the lack
of a direct involvement of patients.
A deeper knowledge about real patient needs, and of their caregivers, is
therefore necessary to define and evaluate effective tools for AAC through eye
tracking devices. This paper reports the trials performed, over a span of 2 years,
on a significant fraction of Italian ALS patients. The trials were conducted in
collaboration between Politecnico di Torino, the hospital San Giovanni Battista
of Torino, and the University of Torino (dept. of Neuroscience).
The main aim of the experimentation is to evaluate if and when eye tracking
technologies have a positive impact on patients’ lives.
2 Methodology
The research is based on the following main principles:
– Adoption of Quality of Life (QoL) assessment scales
– Experimentation with off-the-shelf devices
– Involving a large user base.
A multi-disciplinary team, composed by Neurologists, Psychologists, Speech
therapists and Computer Science Engineers, lead the experimentation.
The neurologists select the patients in according with the following recruit-
ment criteria:
– Ethical: patients who are able to understand the aim of the study and to
give an informed consent.
– Motivational: patients who are unable to speech intelligibly and having
various degrees of hand function impairment.
– Efficacy: patients who have basic to good level of computer literacy.
During the trial, each patient uses an eye tracking system for a week in their
own domestic environment.
The research team schedules two visits and one telephone contact for each
patient during the eye tracking lending period. The speech therapists train pa-
tients and their caregivers to calibrate and use the eye tracking system. The
training also includes a brief course about using applications for writing, com-
munication and Internet browsing in eye tracking mode. Other applications are
installed in according to users’ needs and interests.
The psychologists fill in the patients’ assessment questionnaires just before
the training phase. The questionnaires measure the QoL, the satisfaction about
Life, the Depression level, and the perception to represent a burden.
The following international recognized quantitative scales are been adopted:
– Mc Gill scale (MGS). This scale, developed at McGill’s University [3, 4], ana-
lyzes five factors: physical comfort, physical symptoms, psychological symp-
toms, existential comfort and support.
– Satisfaction With Life Scale (SWLS) [5, 8] which evaluates the satisfaction
about life.
– Zung scale: self rating depression scale [9]; it is fast, simple and it has quan-
titative results.
– Self-Perceived Burden Scale (SPBS) [7, 2]: this questionnaire consists of 25
statements about feelings the patients may or may not have about their
relationships with caregivers.
The same questionnaires are proposed again at the end of the evaluation
period with the purpose of verifying the impact of the eye tracker usage on the
measured parameters. A further questionnaire, developed by the ALS center, is
additionally proposed at the end of the lending period. The ALS questionnaire
focuses on qualitative aspects and feelings, and analyzes the time spent with the
system, the training process, subjective satisfaction, and influence on life quality.
3 Experimental settings
The eye tracker used in the experimentation was the Eye Response Technologies’
ERICA Standard System equipped with Assistive and Communication software
such as ERICA keyboard, mouse emulators, Sensory Software’s The Grid. Stan-
dard Windows and Internet applications are also used in the tests.
The experimentation involved 16 patients (12 men, 4 women) from April
2006 to August 2007. The patients average age was 45 years (min 32, max 78).
The patients were in the advanced phase of the disease, in detail: 7 of them were
tracheotomized, 8 had percutaneous endoscopic gastrostomy tube (PEG), while
6 patients where anarthric and 7 had a severe dysarthria.
4 Case studies
Three particular user case studies are hereafter reported to give a qualitative
outlook of the impact of eye tracking technology on ALS patiens. Permission to
publish this information, in a partially anonymous form, has been obtained.
Marco – Marco is 47 and lives in his house with his family. Before the disease he
was a traveling salesman, frequently traveling around the country. At the time
of the experimentation he was using a communication system (virtual keyboard)
with a computer and a foot switch (in scanning mode). When he tried the eye
control system he was very excited; he used a screen keyboard for communication
and for sending emails quickly and easily. More recently, he started having a lot
of problems with his current system because he has less and less movement
on his feet. He really wants an eye control system, but the Piemonte Regional
Government denied him a grant. He later succeeded, thanks to the help of the
Italian ALS Association, to raise funds for buying an eye tracker, an is currently
collaborating with the device manufacturers. He is also in the process of writing
a book, in collaboration with other ALS patients who use eye trackers.
Paolo – Paolo is 52 and lives at home with his wife. Before the illness, he was a
web designer, and he still is. During the experimentation he was using two mouse
devices, one for moving the cursor and the other for clicking. He needs the eye
tracker for his work, only, because he still successfully uses labial movements for
communication with his family. He uses many programs for his work, and tried
them all on the Erica system. The results were positive and he wants to buy
the software and camera add-on to his computer. In the past he tried other eye
tracking systems but he didn’t like them because “they didn’t work well with
web design programs.” He recently lost the ability to use mice as input devices,
and he is waiting for the national health system to fund him the purchase of an
eye tracker.
Domenico – Domenico is a young man, he lives at home with his wife. He was
eager to try the eye control system to be able to speak, for the first time, with his
2-years old nephew, and also to be able to express his feelings with bad words!
When he tried the eye tracker, finally he could speak with his nephew who could
listen for the first time his “voice”.
5 Quantitative Results
During the initial and final meetings of each trial, the responses of the patients
to the various questionnaires were recorded, and SPSS 12.0 was used to analyze
them from a statistical point of view. The test results showed a clear improve-
ment in the perceived quality of life, in both the MGS and SWLS Scales.
A particularly noticeable improvement was shown in the patients’ perception
of their condition overall, including their psychological well-being and physical
symptoms, although the amount of support required by each patient, and their
perceived depression did not show a significant change (less than 0,05). However,
it must be remembered that these results were achieved over a relatively short
trial period of seven days.
More in detail, Figures 1, 2, 3 report the main results on the four main scales.
The McGill scale (Fig. 1) measures a slight, but generalized, improvement on all
aspects of the quality of life that may be attributed to the eye control equipment.
On the other hand, Fig. 2 shows that there were no significant modifications on
depression and burden scores, while we could measure an improvement on the
satisfaction with life scale (Fig. 3).
Fig. 1. Quality of Life (McGill Scale)
Fig. 2. Depression (ZDS) and self-estimated burden (SPBS)
Fig. 3. SWLS (satisfaction with life scale)
Specific evaluations about the eye control device are analyzed using the ALS
Center questionnaire. In particular, we may notice that the vast majority users
are quite satisfied with eye control devices (Fig. 4(d)); they use it quite often
(Fig. 4(a)), and find it easy to use (Fig. 4(b)) and to learn(Fig. 4(c)).
(a) Time of USE (b) Ease of USE
(c) Learning rate (d) Satisfaction
Fig. 4. ALS Centre questionnaire
6 User comments
Users agree that the system is efficient and effective, and allows more complex
communication, beyond the primary needs. In fact, the majority of patients
used the system every day with a high level of satisfaction. They felt that eye-
control was comfortable and flexible, and required relatively little effort. A great
perceived advantage is that, after calibration, the user is independent in using
applications (compared with Plexiglas tables commonly used for eye-contact
dialogs, which rely on a communication partner). For typing applications, users
appreciated the prediction dictionary and the voice synthesis features. On the
other hand, some patients expressed negative comments, which were mainly due
to loss of motivation after some initial technical problems, or to the difficulty in
calibration or the need of repeating the calibration procedure too often. Some
patients using multi focal lenses could not calibrate the system, but this was
solved by changing the glasses. For users less expert with computers, learning
to use the screen keyboard was somewhat difficult. Finally, some patient with
a residual mobility on some parts of their body had difficulties in keeping their
head perfectly still.
7 Conclusions
All patients showed a strong interest in eye tracking systems, and most of them
had already looked for information about this technology. The Erica system has
generally been well accepted and considered easy enough to be used by ALS
patients with severe disability. The patients with worse clinical conditions had
better acceptance.
Eye tracking benefits are lower for patients with residual arm mobility, while
tracheotomized patients had stronger motivation probably because of two main
reasons: anarthria represents the first motivation for communicating and tra-
cheotomized patients have better ventilation, and brain oxygenation, than pa-
tients with dispnea. The patients who tried the eye tracker system perceived an
improvement of QoL because they were able to communicate independently and
the communication was easier, faster and less laborious.
Acknowledgment
This work has been partially funded by the European Commission under the
EU IST 6th framework program, project 511598 “COGAIN: Communication
by Gaze Interaction”. The sole responsibility of this work lies with the authors
and the Commission is not responsible for any use that may be made of the
information contained therein.
References
1. Beukelman, D.R., Fager, S., Ball, L., Dietz, A. AAC for adults with acquired neuro-
logical conditions. Augmentative and Alternative Communication, 23, 1-17.(2007).
2. Deeken J, Taylor K, Mangan P, Yabroff R and Ingham J, Care for the caregivers:
a review of self-report instruments developed to measure the burden, needs, and
quality of life of informal caregivers.Journal of Pain and Symptom Management,
Volume 26, Issue 4, Pages 922-953. (2003).
3. Cohen, S.R., Hassan, S.A., Lapointe, B.J., and Mount, B.M. Quality of life in HIV
disease by the McGill quality of life questionnaire. AIDS, 10, 1421–1427. (1996).
4. Cohen, S.R., Mount, B.M., Strobel, M.G., and Bui, F. The McGill Quality of Life
Questionnaire: a measure of quality of life appropriate for people with advanced
disease. A preliminary study of validity and acceptability, Palliative Medicine, 9,
207–219.(1995)
5. Diener, E., Emmons, R., Larsen, J., and Griffin, S. The Satisfaction With Life Scale.
J Personality Assessment, 49(1), 71-75.(1985).
6. Kherlopian, Armen R.; Gerrein, Joseph P.; Yue, Minerva; Kim, Kristina E.; Kim, Ji
Won; Sukumaran, Madhav; Sajda, Paul, “Electrooculogram based system for com-
puter control using a multiple feature classification model,” Engineering in Medicine
and Biology Society, 2006. EMBS ’06. 28th Annual International Conference of the
IEEE , vol., no., pp.1295-1298, Aug. 30 2006-Sept. 3 (2006)
7. Novak M and Guest C, Application of a multidimensional caregiver burden inven-
tory, Gerontologist; 29: 798 - 803. (1989)
8. Pavot, W., Diener, E. Review of the Satisfaction with Life Scale. Psychological
Assessment, 5, 164-172. (1993).
9. Zung, W.W. A Self-rating Depression Scale. Archives of General Psychiatry 12:
63-70. (1965).


A Self-rating Depression Scale.

AAC for adults with acquired neurological conditions.

Application of a multidimensional caregiver burden inventory,

Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers.Journal of Pain and Symptom Management,

Electrooculogram based system for computer control using a multiple feature classiﬁcation model,”

Quality of life in HIV disease by the McGill quality of life questionnaire.

Review of the Satisfaction with Life Scale.

The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability,

Eye Tracking Impact on Quality-of-Life of ALS Patients

Chronic neurological disorders in their advanced phase are characterized by a progressive loss of mobility (use of upper and lower limbs), speech and social life. Some of these pathologies, such as amyotrophic lateral sclerosis and multiple sclerosis, are paradigmatic of these deficits. High technology communication instruments, such as eye tracking, can be an extremely important possibility to reintroduce these patients in their family and social life, in particular when they suffer severe disability. 
This paper reports and describes the results of an ongoing experimentation about Eye Tracking impact on the quality of life of amyotrophic lateral sclerosis patients. The aim of the experimentation is to evaluate if and when eye tracking technologies have a positive impact on patients’ lives

CALVO A

CHIÒ A

GHIGLIONE P

PASIAN V

AND VIGNOLA A.

CASTELLINA, EMILIANO

CORNO, Fulvio

FARINETTI, LAURA

PORTO@iris (Publications Open Repository TOrino - Politecnico di Torino)

05 August 2020POLITECNICO DI TORINORepository ISTITUZIONALEEye Tracking Impact on Quality-of-Life of ALS Patients / CALVO A; CHIÒ A; CASTELLINA E; CORNO F.; FARINETTI L;GHIGLIONE P; PASIAN V; AND VIGNOLA A. - STAMPA. - 5105(2008), pp. 70-77. ((Intervento presentato al convegno11th International Conference on Computers Helping People with Special Needs tenutosi a Linz (AT) nel 9-11 July 2008.OriginalEye Tracking Impact on Quality-of-Life of ALS PatientsPublisher:PublishedDOI:10.1007/978-3-540-70540-6_9Terms of use:openAccessPublisher copyright(Article begins on next page)This article is made available under terms and conditions as specified in the  corresponding bibliographic description inthe repositoryAvailability:This version is available at: 11583/1806506 since:SpringerEye tracking impact on Quality-of-life of ALSPatientsAndrea Calvo1, Adriano Chio`1, Emiliano Castellina2, Fulvio Corno2, LauraFarinetti2, Paolo Ghiglione2, Valentina Pasian1, and Alessandro Vignola11 ALS centre ”Molinette” hospital, Torino, Italy2 Politecnico di Torino, Torino, ItalyAbstract. Chronic neurological disorders in their advanced phase arecharacterized by a progressive loss of mobility (use of upper and lowerlimbs), speech and social life. Some of these pathologies, such as amy-otrophic lateral sclerosis and multiple sclerosis, are paradigmatic of thesedeficits. High technology communication instruments, such as eye track-ing, can be an extremely important possibility to reintroduce these pa-tients in their family and social life, in particular when they suffer severedisability.This paper reports and describes the results of an ongoing experimen-tation about Eye Tracking impact on the quality of life of amyotrophiclateral sclerosis patients. The aim of the experimentation is to evaluateif and when eye tracking technologies have a positive impact on patients’lives.1 IntroductionPersons with neurodegenerative diseases are affected by several kinds of symp-toms and problems during the development of the illness (sometimes over along span of years), that have a severe impact over the quality of life. In ad-vanced phases, amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS)are characterized by the complete loss of communication abilities, even withcommon augmentative/substitutive systems, due to the total loss of movementsof limbs and neck and immobilization, with a total dependence on other personsfor the common activities of daily life.A great deal of literature highlights the various aspects related to the careand to improving the quality of life of these patients, through palliative care.In palliative care, it is fundamental to control pain, symptoms, and social, psy-chological and spiritual problems. They aim at improving the quality of lifeof patients and their families. This type of care must adapt, day after day, tothe needs of the patients and of their family. Every treatment needs to be re-examined continuously. From the literature we find that home is the ideal placewhere to apply palliative care. The efforts to improve (or to allow) an effectivecommunication in ALS belong fully to the topic of palliative care. Patients withvery severe disability, thanks to communication tools, may have chances to re-enter their social and family life [1]. Such systems may allow ALS or MS patientsto gain autonomy, even if limited, in their personal life choices.The potential of eye tracking in ALS is extremely high, since these patientsretain their full cognitive capabilities, and while paralysis progresses, in mostcases eye movements are still controllable.There are few research results on using eye trackers with ALS or MS patients.A former study [6] identified some fundamental requirements for Augmentativeand Alternative Communication (AAC) systems in these patients: communi-cating instructions, achieve the satisfaction of their needs, clarify their needs,having an ”affective” communication and transfer informations. The results ofsuch research, even if they offer significant information, are limited by the lackof a direct involvement of patients.A deeper knowledge about real patient needs, and of their caregivers, istherefore necessary to define and evaluate effective tools for AAC through eyetracking devices. This paper reports the trials performed, over a span of 2 years,on a significant fraction of Italian ALS patients. The trials were conducted incollaboration between Politecnico di Torino, the hospital San Giovanni Battistaof Torino, and the University of Torino (dept. of Neuroscience).The main aim of the experimentation is to evaluate if and when eye trackingtechnologies have a positive impact on patients’ lives.2 MethodologyThe research is based on the following main principles:– Adoption of Quality of Life (QoL) assessment scales– Experimentation with off-the-shelf devices– Involving a large user base.A multi-disciplinary team, composed by Neurologists, Psychologists, Speechtherapists and Computer Science Engineers, lead the experimentation.The neurologists select the patients in according with the following recruit-ment criteria:– Ethical: patients who are able to understand the aim of the study and togive an informed consent.– Motivational: patients who are unable to speech intelligibly and havingvarious degrees of hand function impairment.– Efficacy: patients who have basic to good level of computer literacy.During the trial, each patient uses an eye tracking system for a week in theirown domestic environment.The research team schedules two visits and one telephone contact for eachpatient during the eye tracking lending period. The speech therapists train pa-tients and their caregivers to calibrate and use the eye tracking system. Thetraining also includes a brief course about using applications for writing, com-munication and Internet browsing in eye tracking mode. Other applications areinstalled in according to users’ needs and interests.The psychologists fill in the patients’ assessment questionnaires just beforethe training phase. The questionnaires measure the QoL, the satisfaction aboutLife, the Depression level, and the perception to represent a burden.The following international recognized quantitative scales are been adopted:– Mc Gill scale (MGS). This scale, developed at McGill’s University [3, 4], ana-lyzes five factors: physical comfort, physical symptoms, psychological symp-toms, existential comfort and support.– Satisfaction With Life Scale (SWLS) [5, 8] which evaluates the satisfactionabout life.– Zung scale: self rating depression scale [9]; it is fast, simple and it has quan-titative results.– Self-Perceived Burden Scale (SPBS) [7, 2]: this questionnaire consists of 25statements about feelings the patients may or may not have about theirrelationships with caregivers.The same questionnaires are proposed again at the end of the evaluationperiod with the purpose of verifying the impact of the eye tracker usage on themeasured parameters. A further questionnaire, developed by the ALS center, isadditionally proposed at the end of the lending period. The ALS questionnairefocuses on qualitative aspects and feelings, and analyzes the time spent with thesystem, the training process, subjective satisfaction, and influence on life quality.3 Experimental settingsThe eye tracker used in the experimentation was the Eye Response Technologies’ERICA Standard System equipped with Assistive and Communication softwaresuch as ERICA keyboard, mouse emulators, Sensory Software’s The Grid. Stan-dard Windows and Internet applications are also used in the tests.The experimentation involved 16 patients (12 men, 4 women) from April2006 to August 2007. The patients average age was 45 years (min 32, max 78).The patients were in the advanced phase of the disease, in detail: 7 of them weretracheotomized, 8 had percutaneous endoscopic gastrostomy tube (PEG), while6 patients where anarthric and 7 had a severe dysarthria.4 Case studiesThree particular user case studies are hereafter reported to give a qualitativeoutlook of the impact of eye tracking technology on ALS patiens. Permission topublish this information, in a partially anonymous form, has been obtained.Marco – Marco is 47 and lives in his house with his family. Before the disease hewas a traveling salesman, frequently traveling around the country. At the timeof the experimentation he was using a communication system (virtual keyboard)with a computer and a foot switch (in scanning mode). When he tried the eyecontrol system he was very excited; he used a screen keyboard for communicationand for sending emails quickly and easily. More recently, he started having a lotof problems with his current system because he has less and less movementon his feet. He really wants an eye control system, but the Piemonte RegionalGovernment denied him a grant. He later succeeded, thanks to the help of theItalian ALS Association, to raise funds for buying an eye tracker, an is currentlycollaborating with the device manufacturers. He is also in the process of writinga book, in collaboration with other ALS patients who use eye trackers.Paolo – Paolo is 52 and lives at home with his wife. Before the illness, he was aweb designer, and he still is. During the experimentation he was using two mousedevices, one for moving the cursor and the other for clicking. He needs the eyetracker for his work, only, because he still successfully uses labial movements forcommunication with his family. He uses many programs for his work, and triedthem all on the Erica system. The results were positive and he wants to buythe software and camera add-on to his computer. In the past he tried other eyetracking systems but he didn’t like them because “they didn’t work well withweb design programs.” He recently lost the ability to use mice as input devices,and he is waiting for the national health system to fund him the purchase of aneye tracker.Domenico – Domenico is a young man, he lives at home with his wife. He waseager to try the eye control system to be able to speak, for the first time, with his2-years old nephew, and also to be able to express his feelings with bad words!When he tried the eye tracker, finally he could speak with his nephew who couldlisten for the first time his “voice”.5 Quantitative ResultsDuring the initial and final meetings of each trial, the responses of the patientsto the various questionnaires were recorded, and SPSS 12.0 was used to analyzethem from a statistical point of view. The test results showed a clear improve-ment in the perceived quality of life, in both the MGS and SWLS Scales.A particularly noticeable improvement was shown in the patients’ perceptionof their condition overall, including their psychological well-being and physicalsymptoms, although the amount of support required by each patient, and theirperceived depression did not show a significant change (less than 0,05). However,it must be remembered that these results were achieved over a relatively shorttrial period of seven days.More in detail, Figures 1, 2, 3 report the main results on the four main scales.The McGill scale (Fig. 1) measures a slight, but generalized, improvement on allaspects of the quality of life that may be attributed to the eye control equipment.On the other hand, Fig. 2 shows that there were no significant modifications ondepression and burden scores, while we could measure an improvement on thesatisfaction with life scale (Fig. 3).Fig. 1. Quality of Life (McGill Scale)Fig. 2. Depression (ZDS) and self-estimated burden (SPBS)Fig. 3. SWLS (satisfaction with life scale)Specific evaluations about the eye control device are analyzed using the ALSCenter questionnaire. In particular, we may notice that the vast majority usersare quite satisfied with eye control devices (Fig. 4(d)); they use it quite often(Fig. 4(a)), and find it easy to use (Fig. 4(b)) and to learn(Fig. 4(c)).(a) Time of USE (b) Ease of USE(c) Learning rate (d) SatisfactionFig. 4. ALS Centre questionnaire6 User commentsUsers agree that the system is efficient and effective, and allows more complexcommunication, beyond the primary needs. In fact, the majority of patientsused the system every day with a high level of satisfaction. They felt that eye-control was comfortable and flexible, and required relatively little effort. A greatperceived advantage is that, after calibration, the user is independent in usingapplications (compared with Plexiglas tables commonly used for eye-contactdialogs, which rely on a communication partner). For typing applications, usersappreciated the prediction dictionary and the voice synthesis features. On theother hand, some patients expressed negative comments, which were mainly dueto loss of motivation after some initial technical problems, or to the difficulty incalibration or the need of repeating the calibration procedure too often. Somepatients using multi focal lenses could not calibrate the system, but this wassolved by changing the glasses. For users less expert with computers, learningto use the screen keyboard was somewhat difficult. Finally, some patient witha residual mobility on some parts of their body had difficulties in keeping theirhead perfectly still.7 ConclusionsAll patients showed a strong interest in eye tracking systems, and most of themhad already looked for information about this technology. The Erica system hasgenerally been well accepted and considered easy enough to be used by ALSpatients with severe disability. The patients with worse clinical conditions hadbetter acceptance.Eye tracking benefits are lower for patients with residual arm mobility, whiletracheotomized patients had stronger motivation probably because of two mainreasons: anarthria represents the first motivation for communicating and tra-cheotomized patients have better ventilation, and brain oxygenation, than pa-tients with dispnea. The patients who tried the eye tracker system perceived animprovement of QoL because they were able to communicate independently andthe communication was easier, faster and less laborious.AcknowledgmentThis work has been partially funded by the European Commission under theEU IST 6th framework program, project 511598 “COGAIN: Communicationby Gaze Interaction”. The sole responsibility of this work lies with the authorsand the Commission is not responsible for any use that may be made of theinformation contained therein.References1. Beukelman, D.R., Fager, S., Ball, L., Dietz, A. AAC for adults with acquired neuro-logical conditions. Augmentative and Alternative Communication, 23, 1-17.(2007).2. Deeken J, Taylor K, Mangan P, Yabroff R and Ingham J, Care for the caregivers:a review of self-report instruments developed to measure the burden, needs, andquality of life of informal caregivers.Journal of Pain and Symptom Management,Volume 26, Issue 4, Pages 922-953. (2003).3. Cohen, S.R., Hassan, S.A., Lapointe, B.J., and Mount, B.M. Quality of life in HIVdisease by the McGill quality of life questionnaire. AIDS, 10, 1421–1427. (1996).4. Cohen, S.R., Mount, B.M., Strobel, M.G., and Bui, F. The McGill Quality of LifeQuestionnaire: a measure of quality of life appropriate for people with advanceddisease. A preliminary study of validity and acceptability, Palliative Medicine, 9,207–219.(1995)5. Diener, E., Emmons, R., Larsen, J., and Griffin, S. The Satisfaction With Life Scale.J Personality Assessment, 49(1), 71-75.(1985).6. Kherlopian, Armen R.; Gerrein, Joseph P.; Yue, Minerva; Kim, Kristina E.; Kim, JiWon; Sukumaran, Madhav; Sajda, Paul, “Electrooculogram based system for com-puter control using a multiple feature classification model,” Engineering in Medicineand Biology Society, 2006. EMBS ’06. 28th Annual International Conference of theIEEE , vol., no., pp.1295-1298, Aug. 30 2006-Sept. 3 (2006)7. Novak M and Guest C, Application of a multidimensional caregiver burden inven-tory, Gerontologist; 29: 798 - 803. (1989)8. Pavot, W., Diener, E. Review of the Satisfaction with Life Scale. PsychologicalAssessment, 5, 164-172. (1993).9. Zung, W.W. A Self-rating Depression Scale. Archives of General Psychiatry 12:63-70. (1965).

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Eye Tracking Impact on Quality-of-Life of ALS Patients

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