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Journal of Motor Behavior Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/vjmb20
An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden ab
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Chi-Shin Hwang , Ho-Hsiu Weng , Li-Fen Wang , Chon-Haw Tsai & Hao-Teng Chang a
School of Medicine, National Yang Ming University, Taipei, Taiwan
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Department of Neurology, Taipei City Hospital–Zhong Xiao Branch, Taiwan
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Department of Nursing, Taipei City Hospital–Zhong Xiao Branch, Taiwan
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Department of Neurology, China Medical University Hospital, Taichung, Taiwan
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Graduate Institute of Basic Medical Science, College of Medicine, China Medical University, Taichung, Taiwan f
Department of Computer Science and Information Engineering, Asia University, Taichung, Taiwan Published online: 14 Apr 2014.
To cite this article: Chi-Shin Hwang, Ho-Hsiu Weng, Li-Fen Wang, Chon-Haw Tsai & Hao-Teng Chang (2014) An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden, Journal of Motor Behavior, 46:4, 233-238, DOI: 10.1080/00222895.2014.891970 To link to this article: http://dx.doi.org/10.1080/00222895.2014.891970
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Journal of Motor Behavior, Vol. 46, No. 4, 2014 C Taylor & Francis Group, LLC Copyright
RESEARCH ARTICLE
An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden Chi-Shin Hwang1,2, Ho-Hsiu Weng3, Li-Fen Wang3, Chon-Haw Tsai4, Hao-Teng Chang5,6
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1 School of Medicine, National Yang Ming University, Taipei, Taiwan. 2Department of Neurology, Taipei City Hospital–Zhong Xiao Branch, Taiwan. 3Department of Nursing, Taipei City Hospital–Zhong Xiao Branch, Taiwan. 4Department of Neurology, China Medical University Hospital, Taichung, Taiwan. 5Graduate Institute of Basic Medical Science, College of Medicine, China Medical University, Taichung, Taiwan. 6Department of Computer Science and Information Engineering, Asia University, Taichung, Taiwan.
Dietz, 2007). Fortunately, most ALS patients those are totally paralyzed can still keep the control of their eye movements for a long period of time, which provides an opportunity for communication (Rowland & Shneider, 2001). Patients with communication obstacle often find it frustrating that people around them cannot understand their inner thoughts or feelings. When their inside is not met, emotional distress (e.g., anxiety disorder) and even mental illness (e.g., major depression) often result. These communication deficits of ALS patients have the potential to cause significant physiological and psychological inference to both the patients and the caregivers. Furthermore, caregivers of ALS patients are even at higher risk for depression and reduced quality of life. It has been reported that aggravation degrees of depression tend to be even greater in caregivers than in patients with ALS (Gauthier et al., 2007). The quality of life or caregivers of ALS patients was found to be much lower than the national average quality of life in Japan (Miyashita et al., 2011). Passage of time did not affect quality of life in ALS patients, but quality of life related to physical symptoms declined over time in their caregivers Roach, Averill, Segerstrom, & Kasarskis, 2009). The WHO determines quality of life by analyzing parameters associated with cognition, emotion (positive and negative), and health (physical and mental; Yao, Chung, Yu, & Wang, 2002). As such, mental illnesses are generally associated with a lower quality of life (Mendlowicz & Stein, 2000; Saarni et al., 2007). Augmentative and alternative communication systems often allow patients with communication disorders to maintain effective interactions with their family and medical team (Hemsley et al., 2001). As a result, both dignity and quality of life are improved for patients with deteriorating conditions Fried-Oken et al., 2006; Gruis, Wren, & Huggins, 2011). Unfortunately, there are very few assistive devices that are suitable for patients with ALS. Traditional phonetic boards are used most frequently (at home and in the hospital; Beukelman & Garrett, 1988), but these require caregiver’s assistance to translate the needs of the patient. Phonetic board is similar to E-Tran Board that patients can select letters with winking or blinking to deliver messages to caregivers. It is inconvenient
ABSTRACT. Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease. In some cases, patients with ALS retain a normal level of consciousness but disease progression eventually results in generalized paralysis, which first impedes and then prevents oral communication. This communication obstacle can generate a great deal of stress for the patient, family, and caregiver. Here the authors ask whether the use of an eye-tracking assistive device can improve quality of life for ALS patients and relieves burden of their primary caregivers. Subjects were divided into two groups depending on whether they used (n = 10) or did not use (n = 10) an eye-tracking assistive device. The authors assessed patients’ quality of life and severity of depression using the ALS Specific Quality of Life Instrument–Revised and the Taiwanese Depression Questionnaire, respectively. The Caregiver Burden Scale was used to assess the burden on caregivers. Our study shows that the eyetracking assistive device significantly improved patients’ quality of life, as compared with patients in the nonuser group (p < .01). The assistive device also reduced the burden on caregivers (p < .05). This is likely a result of the improvement of patient’s autonomy and more effective communication between patient and caregiver. Keywords: amyotrophic lateral sclerosis, eye-tracking assistive device, quality of life
myotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease that the World Health Organization (WHO) recognizes as one of the most important and challenging human diseases of the twenty-first century. Approximately 10% of all patients with ALS suffer from a genetically inherited form of the disease called familial ALS and the others are sporadic form (Francis, Bach, & DeLisa, 1999; Kunst, 2004). The pathogenesis of ALS remains unclear. The major underlying pathologic picture is characterized by selective loss of motor neurons in cerebral cortex, brainstem, and spinal cord. ALS usually progresses into quadriplegia and bulbar palsy concomitant with respiratory failure within 3–5 years after diagnosis (Turner, Parton, Shaw, Leigh, & Al-Chalabi, 2003). If patients are provided respiratory therapy and good medical care, however, their lives can be prolonged for many years or even decades. ALS has been recognized as a multisystemic neuronal disorder (Agosta et al., 2012); however, most patients with ALS retain clear consciousness throughout the whole course of disease. Meanwhile, the most tragic is that progressive quadriplegia with bulbar muscle atrophy causes increasing difficulty to communicate and express their daily needs. This communication obstacle of ALS patients has resulted into been classified as severe communication obstacle (Beukelman, Fager, Ball, &
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Correspondence address: Hao-Teng Chang, Graduate Institute of Basic Medical Science, College of Medicine, China Medical University, No. 91, Hsueh-Shih Road, Taichung 40402, Taiwan. e-mail: [email protected] 233
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and time-consuming. A more autonomous assistive device tracks the pupil of eye to control a computer. In this way, patients are able to express their needs without assistance from a caregiver (Miyasaka, Shoji, & Tanaka, 2011). Devices that facilitate communication between patients and caregivers could potentially increase the quality of life for both individuals. In 2010, a brain–computer interface (BCI) system was developed for ALS patients. The BCI users and their families mentioned that the system indeed improves the independence in patient’s social interactions and at work. Via the statement of several BCI users, this research concluded that BCI significantly contributes to the improvement of quality life and productivity (Sellers, Vaughan, & Wolpaw, 2010). Therefore, further development of popular computerized assistive communication devices for motor disabled people is valuable. In this study, we investigated whether an eye-tracking assistive device improves the quality of life for ALS patients. We also asked whether this device affects the burden experienced by caregivers. Methods Subjects and Devices This study was approved by the Institutional Review Board of China Medical University (CMU) Hospital. Beginning in October of 2012, 20 patients with ALS (13 men and seven women) and their 20 primary caregivers (six men and 14 women) were recruited from the Taipei City Hospital (Zhongxiao Branch) and the CMU Hospital in Taiwan. They all have no usable limb or head movement and undergo tracheostomy ventilation. An initial face-to-face survey was administered, and responses were recorded anonymously. Proxy responses were not used during the interview process, but information was sometimes conveyed to and from the patient by a caregiver. All patients with ALS were diagnosed by more than two experienced neurologists as clinically definite sporadic ALS (according to the El Escorial criteria; Brooks, Miller, Swash, & Munsat, 2000; Radunovi´c, Mitsumoto, & Leigh, 2007). The clinical severity of each patient was determined using the Revised ALS Functional Rating Scale (ALSFRS-R; Brooks et al., 1996; Cedarbaum & Stambler, 1997). Twenty subjects with ALS who only used a phonetic board for communication before this case-control study were arbitrarily divided into two groups: 10 patients (with their primary caregivers), called user group, those who would use an eye-tracking assistive device for six months in this study; and 10 patients (with their primary caregivers), called the nonuser group, those who continued to use a phonetic board for communication (i.e., patients of nonuser group never used any computer-assistive communication devices). The baseline data of quality of life for each subject was measured before this study. All the 20 patients with ALS have clear consciousness and can clearly express their requests to their caregiver. The informed consent was agreed by all enrolled individuals including subjects with ALS and their caregivers in this study. 234
The eye-tracking communication assistive devise used in this study were provided by Spring Track, Utechzone Co., Ltd (Taipei, Taiwan). This machine used a noncontact optical eye tracker for measuring a patient’s eye positions and eye movement. Using infrared, the light reflected from retina through the pupil is sensed by a specially designed optical sensor. Applying this pupil-tracking technology, the machine can calculates where patients are looking at on the screen and then the functions of the computer can be activated by gaze or blink of the patient. Through this way, patients can easily operate the computer by eye gazing. Via this computer, a patient can go on internet and send e-mail. There is no need to wear or hold anything on the patient side. Patients usually take only a few days to completely familiar with the operation of this eye-tracking assist devise and the computer. Characteristics of the Subjects Demographic information and clinical characteristics of the sample groups are shown in Table 1. The patients with ALS (along with their primary caregivers) were divided into two groups of equal size. The disease duration since the onset of first clinical symptom was 23.5 months for user group and 24.5 months for nonuser group. The clinical severity of ALS was evaluated using the ALSFRS-R. Mean ALSFRS-R scores were 3.2 for the user group (range = 1–5, SD = 1.66) and 2.9 for the nonuser group (range = 1–7, SD = 1.87). The average age was 51.5 years for the user group (range = 40–66 years, SD = 7.72 years) and 58.2 years old for the nonuser group (range = 38–85 years, SD = 11.36 years). Within the user group, 30% of the patients and caregivers had at least college-level of education. For the nonuser group, 60% of the patients and 40% of the caregivers attained this level of education. The total amount of time spent on using the eye-tracking assistive device for patients was: 1–3 h/day in 40% of the patients, 3–5 hr/day in 40% of the patients, and 5–8 hr/day in 20% of the patients. In the rest of time, they used phonetic board for communication, if needed. The spouse of the patient served as the primary caregiver for 70% and 90% of the user and nonuser patients, respectively. Questionnaires In this case-control study, two validated questionnaires were used for evaluation of ALS patients before and after the intervention period of this research. These were the Taiwanese Depression Questionnaire (TDQ; with approval from the John Tung Foundation, Taiwan; Lee, Yang, Lai, Chiu, & Chau, 2000) and the Revised ALS Specific Quality of Life Instrument (ALSSQOL-R; Simmons et al., 2006). The TDQ incorporates cultural features that are helpful for Taiwanese patients. The TDQ assesses physical, sentimental, and cognitive indicators with 18 items on a 4-point Likert-type scale. Scores for each response range from 0 (never or very infrequently) to 3 (often or always). As such, overall test scores range from 0 to 54, with higher scores indicating a greater degree of depression. Journal of Motor Behavior
Improvement of the Quality of Life for ALS
Results
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TABLE 1. Characteristics of the Patients and Caregivers Characteristic Patients
User (n = 10)
Nonuser (n = 10)
ALSFRS score Age (years) Disease course (months) Gender (female/male) Education (college degree or higher) Married Assistive-device usage
3.2 (1–5)a 51.5 (40–66)a 23.5 6/4 3
2.9 (1–7)a 58.2 (38–85)a 24.5 1/9 6
7 4 (1–3 hr/day)b 4 (3–5 hr/day) 2 (5–8 hr/day) (n = 10) 55.9 (27–82)a 6/4 3
10
(n = 10) 54.6 (38–62)a 8/2 4
8 7
9 9
Caregivers Age (years) Gender (female/male) Education (college degree or higher) Married Spouse of the patient
Note. Values in parentheses indicate the range. Assistive-device used times included amusements (e.g., internet access, listening to the radio, watching videos). ALSFRS = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale.
The ALSSQOL-R was developed by the Philadelphia College of Osteopathic Medicine to specifically assess quality of life for ALS patients. There are six domains within the ALSSQOL-R, those are negative emotion, interaction with people and the environment, religiosity, intimacy, physical symptoms, and bulbar function. The ALSSQOL-R is a 50item disease-specific questionnaire that is completed by the ALS patients. Each item of the ALSSQOL-R is rated by the individual using an 11-point Likert-type scale, ranging from 0 (least desirable situation) to 10 (most desirable situation). As such, lower scores indicate worse quality of life. The Caregiver Burden Scale (CBS) is a validated questionnaire for caregivers (Poulshock & Deimling, 1984; Robinson, 1983; Zarit, Reever, & Bach-Peterson (1980). The CBS assesses the caregiver’s satisfaction within four domains (physical and personal time, family relations, emotional and financial burdens, and psychological burden). The self-rating 4-point Likert-type scale ranges from 0 (never) to 3 (often). A high score indicates this caregiver of an ALS patient is experiencing greater pressure. Statistical Analysis The data were analyzed using Excel (Microsoft, Seattle, WA) and GraphPad Prism software (GraphPad Software, Inc., La Jolla, CA). For each group, the median value is presented, and error bars indicate interquartile range. For statistical comparisons between two groups, the two-tailed Student’s t test was used.
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Before intervention of the eye-tracking assistive device, baseline data of TDQ, ALSSQOL-R, and CBS scores for each subject in both control and experimental groups were collected and compared. Our results showed no significant difference of baseline data between control and experimental groups.
TDQ Scores The TDQ is proverbially useful for assessing depression among Taiwanese patients. Our study showed that TDQ score of patients were significantly improved after the intervention of eye-tracking assistive device for ALS patients. The median TDQ score was higher for the group of patients who did not use the eye-tracking assistive device than for the user group (p < .001; Figure 1A). This indicates that nonuser patients were generally more depressed. Sentimental and cognitive indicators affected the total TDQ scores most dramatically (p < .01 and p < .001, respectively; Figures 1B and 1C). As such, the communication device may help patients express their needs more clearly, resulting in a more comfortable daily life.
FIGURE 1. Distributions of Taiwanese Depression Questionnaire (TDQ) scores for amyotrophic lateral sclerosis patients. TDQ scores were compared between patients that used an eye-tracking assistive device (user) and patients that did not use the assistive device (nonuser). Results are shown for the total TDQ score (A), the TDQ score associated with sentiment indicators (B), and the TDQ score associated with cognitive indicators (C). For each graph, the middle horizontal bar indicates the median value, whereas the top and bottom horizontal bars indicate the interquartile range. ∗∗ p < .01. ∗∗∗ p < .001.
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ALSSQOL-R Scores
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The ALSSQOL-R was used to evaluate the overall quality of life for individuals with ALS. The use of an eyetracking assistive device resulted in higher ALSSQOL-R average scores, as compared with nonuser patients (p < .001; Figure 2A). This indicates that individuals in the user group had a better quality of life. We also evaluated scores associated with three domains: negative emotion, interaction with people and environment, and intimacy. For each domain, the scores were significantly higher in patients who used the eye-tracking assistive device (p < .001, p < .01, and p < .01, respectively; Figures 2B–D). This indicates that the eyetracking communication device can improve the quality of life for ALS patients. CBS Scores The CBS was used to measure the effect of eye-tracking assistive device on caregivers. After the use of eye-tracking assistive device for ALS patients, CBS scores were significantly improved for caregivers associated with the users (p < .05; Figure 3A). This indicates that when a patient used the eye-tracking assistive device the burden of care was reduced for the caregiver. The final total CBS scores were primarily influenced by significant difference in two domains: physical and personal time burden, and family relations burden (p < .05 and p < .05, respectively; Figures 3B and 3C).
FIGURE 2. Distributions of Revised Amyotrophic Lateral Sclerosis Specific Quality of Life Instrument (ALSSQOL-R) scores for amyotrophic lateral sclerosis patients. ALSSQOLR scores were compared between patients that used an eyetracking assistive device (user) and patients that did not use the assistive device (nonuser). Results are shown for the total ALSSQOL-R score (A), the ALSSQOL-R score associated with negative emotion (B), the ALSSQOL-R score associated with interaction (C), and the ALSSQOL-R score associated with intimacy (D). For each graph, the middle horizontal bar indicates the median value, whereas the top and bottom horizontal bars indicate the interquartile range. ∗∗ p < .01. ∗∗∗ p < .001.
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FIGURE 3. Distribution of Caregiver Burden Scale (CBS) scores for caregivers of amyotrophic lateral sclerosis patients. CBS scores of caregivers were compared between user group and nonuser group. Results are shown for the total CBS score (A), the CBS score associated with physical and personal time burdens (B), and the CBS score associated with the burden of family relations (C). The middle horizontal bar indicates the median value, whereas the top and bottom horizontal bars indicate the interquartile range. ∗ p < .05.
Discussion ALS is a neurodegenerative disease that eventually causes quadriplegia. Without the ability to move, patients experience considerable obstacles to both oral and limb-based modes of communication. These communication barriers can affect the quality of life for patients, families, and caregivers. Patients with end-stage ALS used to communicate with healthcare professionals using assistive technologies (Doyle & Phillips, 2011). Recently, a review articles concluded that eye-gaze independent Electroencephalography (EEG)–based BCI presented a high accuracy and speedy communication for patients (Riccio, Mattia, Simione, Olivetti, & Cincotti, 2012). However, these interfaces were highly demanding in terms of attention and memory load for patients, and cannot be popularized. A report employed the Individually Prioritized Problem Assessment (Wessels et al., 2000) scale to evaluate the quality of life for ALS patients with or without using eye-tracking communication device. Caligari and colleagues (2013) mentioned that with application of the eye-tracking communication device (Mytobii© P10 Eye Tracker, Tobii Technology, Danderyd, Sweden; iAble© software ver. 1.2, SRLabs Co., Milan, Italy), the quality of life for ALS patients was improved in the group those using the device as compared with patients without using the device (Caligari, Godi, Guglielmetti, Franchignoni, & Nardone, 2013). Therefore, it is important to link the communication technology with the position of patient’s eye as the cursor of computer. In this way, patients can communicate through the computer via gaze control (Ball et al., 2010; Journal of Motor Behavior
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Improvement of the Quality of Life for ALS
Gibbons & Beneteau, 2010). Compared with other communication technologies, the eye-tracking assistive device is the least fatiguing for ALS patients (Gibbons & Beneteau, 2010). Our study, using both the TDQ and the ALSSQOL-R for evaluation, revealed that patients with ALS who did not use the eye-tracking assistive device were generally more depressed and had a lower quality of life. A number of factors affected this quality of life for these patients, including their physical condition and perceived qualities of sentiment (e.g., felt tantrum, sad and bother), cognition (e.g., concentration, confidence, negative thoughts), intimacy, and interactions (with people and the environment). Scores for these factors were reliably higher in the user group than the nonuser group. The eye-tracking assistive device seems to enhance the ability of a patient to interact socially, to participate in the community, and to make personal choices about her or his care. These kinds of social interactions generally increase confidence and allow a patient to face the illness with more optimism (Kivimaki et al., 2005). ALS disease progression makes the patient more and more dependent on caregivers to accomplish everyday tasks. This means that the burden and time required caring for the patient gradually increases. A previous study revealed that as a patient with ALS deteriorates, the caregiver experiences significantly greater time-dependence and social-restriction burdens (Bromberg & Forshew, 2002; Goldstein et al., 1998; Goldstein, Atkins, Landau, Brown, & Leigh, 2006). Here we demonstrate that the use of an eye-tracking assistive device improves CBS scores in two domains: physical and personal time and family relations. By relieving these major burdens, the primary caregiver, therefore, had more time to participate in social activities and to take care of other family members. Our study has shown that the use of an eye-tracking assistive device has positive benefits for both ALS patients and their caregivers. This result is similar with the conclusion of another recent report (Galigari et al., 2013). There are some limitations of our study. Although, no matter patients or their caregivers, our research results have shown significant improvement of life quality in the user group as compared with nonuser group, the sample size was relatively small. Another limitation is although we tried our best to randomize our experimental and control groups, some patients’ autonomy of jointing the different groups still have some inference during our initial grouping. The other limitation of this study is the average education level of ALS patients in nonuser group is significantly higher than that of user group. This could be related to a cause of higher final TDQ scores in our nonuser group. However, the subjects of either users or nonusers groups have suffered from ALS for around two years and they all used phonetic board as their daily communication tool in the past few years. The initial baseline TDQ scores are similar between the two groups. There are some limitations of using eye-tracking assistive device for ALS patients. First, the eye-tracking assistive device is too bulky to move with wheelchair. Second, the course of ALS is progressive, before completely paralyzed, the 2014, Vol. 46, No. 4
patients will rather to use their usable limb to operate conventional computer for communication. Third, eyeballs stability and control ability is necessary for using eye-tracking assistive device. Although most quadriplegic ALS patients can still keep the control of their eye movement for years, in the long run, they will lose this ability, which will prohibit their use of eye-tracking assistive device. Meanwhile, the device cannot smoothly detect the position of the pupil if the patient has nystagmus. Finally, the high cost of a computerized eyetracking assistive device still affects its popularity, although some strategies including price decrease, renting, and donation programs are going on in many nonprofit organizations. Holistic health care, including physical and mental care, is the gold standard for treatment of patients with ALS (Radunovi´c et al., 2007). Among these treatment strategies, how to improve the patients’ autonomy and their communication efficiency is a very important issue. Effective communication surely can improve patients’ autonomy, independency and satisfaction of life. We wish our study results could push government inputting more attention to the holistic health care of ALS patients, especially the improvement of communication ability and autonomy of ALS patients. Hopefully more patients can be benefited from this new technology in the near future. ACKNOWLEDGMENTS The authors wish to thank the patients and caregivers who took part in this study for sharing their experiences. They also would like to thank Utechzone Co., Ltd, for providing the eye-tracking assistive devices that were used for this study. Chi-Shin Hwang designed the experiments and drafted the manuscript. Ho-Hsiu Weng and Li-Fen Wang contacted and interviewed subjects, and finalized biostatistics. ChonHaw Tsai recruited the subjects. Hao-Teng Chang designed the experiments, coordinated this project, and wrote the manuscript. FUNDING This project was supported in part by Department of Health in Taiwan (DOH102-TD-B-111-004). One research assistant, Mr. Chien-Ming Wang (an MS researcher of CMU) who helped us to conduct interviews, was funded by a company (Utechzone Co., Ltd). This company, however, did not participate in the preparation of the article, nor did it financially support this part of the project. REFERENCES Agosta, F., Valsasina, P., Riva, N., Copetti, M., Messina, M. J., Prelle, A., . . . Filippi, M. (2012). The cortical signature of amyotrophic lateral sclerosis. PLoS One, 7(8), e42816. Ball, L., Nordness, A., Fager, S., Kersch, K., Pattee, G., & Beukelman, D. (2010). Eye-gaze access of AAC technology for persons with amyotrophic lateral sclerosis. Journal of Medical Speech Language Pathology, 18, 11–23. 237
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Lee, Y., Yang, M. J., Lai, T. J., Chiu, N. M., & Chau, T. T. (2000). Development of the Taiwanese Depression Questionnaire. Chang Gung Medical Journal, 23, 688–694. Mendlowicz, M. V., & Stein, M. B. (2000). Quality of life in individuals with anxiety disorders. American Journal of Psychiatry, 157, 669–682. Miller, R. G., Jackson, C. E., Kasarskis, E. J., England, J. D., Forshew, D., Johnston, W., . . . Kasarskis, J. E. (2009). Practice parameter update. The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Neurology, 73, 1227–1233. Miyasaka, T., Shoji, M., & Tanaka, T. (2011). Development and clinical evaluation of an eye movement input device designed to assist continuous communication in amyotrophic lateral sclerosis patients. Journal of Medical and Biological Engineering, 31, 265–271. Miyashita, M., Narita, Y., Sakamoto, A., Kawada, N., Akiyama, M., Kayama, M., . . . Fukuhara, S. (2011). Health-related quality of life among community-dwelling patients with intractable neurological diseases and their caregivers in Japan. Psychiatry and Clinical Neurosciences, 65, 30–38. Poulshock, S. W., & Deimling, G. T. (1984). Families caring for elders in residence: Issues in the measurement of burden. Journal of Gerontology, 39, 230–239. Radunovi´c, A., Mitsumoto, H., & Leigh, P. N. (2007). Clinical care of patients with amyotrophic lateral sclerosis. Lancet of Neurology, 6, 913–925. Riccio, A., Mattia, D., Simione, L., Olivetti, M., & Cincotti, F. (2012). Eye-gaze independent EEG-based brain-computer interfaces for communication. Journal of Neural Engineering, 9, 045001. Roach, A. R., Averill, A. J., Segerstrom, S. C., & Kasarskis, E. J. (2009). The dynamics of quality of life in ALS patients and caregivers. Annals of Behavioral Medicine, 37, 197–206. Robinson, B. C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344–348. Rowland, L. P., & Shneider, N. A. (2001). Amyotrophic lateral sclerosis. The New England Journal of Medicine, 344, 1688–1700. Saarni, S. I., Suvisaari, J., Sintonen, H., Pirkola, S., Koskinen, S., Aromaa, A., & L¨onnqvist, J. (2007). Impact of psychiatric disorders on health-related quality of life: General population survey. The British Journal of Psychiatry, 190, 326–332. Sellers, E. W., Vaughan, T. M., & Wolpaw, J. R. (2010). A braincomputer interface for long-term independent home use. Amyotrophic Lateral Sclerosis, 11, 449–455. Simmons, Z., Felgoise, S. H., Bremer, B. A., Walsh, S. M., Hufford, D. J., Bromberg, M. B., . . . McCluskey, L. (2006). The ALSSQOL: Balancing physical and nonphysical factors in assessing quality of life in ALS. Neurology, 67, 1659–1664. Turner, M. R., Parton, M. J., Shaw, C. E., Leigh, P. N., & AlChalabi, A. (2003). Prolonged survival in motor neuron disease: A descriptive study of the King’s database 1990–2002. Journal of Neurology, Neurosurgery, and Psychiatry, 74, 995–997. Wessels, R., de Witte, L., Andrich, R., Ferrario, M., Persson, J., Oberg, B., . . . Lorentsen, O. (2000). IPPA, a user-centred approach to assess effectiveness of Assistive Technology provision. Technology and Disability, 13, 105–115. Yao, G., Chung, C. W., Yu, C. F., & Wang, J. D. (2002). Development and verification of validity and reliability of the WHOQOLBREF Taiwan version. Journal of the Formosan Medical Association, 101, 342–351. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655. Received October 2, 2013 Revised January 18, 2014 Accepted January 31, 2014 Journal of Motor Behavior
Journal of Motor Behavior Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/vjmb20
An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden ab
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Chi-Shin Hwang , Ho-Hsiu Weng , Li-Fen Wang , Chon-Haw Tsai & Hao-Teng Chang a
School of Medicine, National Yang Ming University, Taipei, Taiwan
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Department of Neurology, Taipei City Hospital–Zhong Xiao Branch, Taiwan
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Department of Nursing, Taipei City Hospital–Zhong Xiao Branch, Taiwan
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Department of Neurology, China Medical University Hospital, Taichung, Taiwan
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Graduate Institute of Basic Medical Science, College of Medicine, China Medical University, Taichung, Taiwan f
Department of Computer Science and Information Engineering, Asia University, Taichung, Taiwan Published online: 14 Apr 2014.
To cite this article: Chi-Shin Hwang, Ho-Hsiu Weng, Li-Fen Wang, Chon-Haw Tsai & Hao-Teng Chang (2014) An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden, Journal of Motor Behavior, 46:4, 233-238, DOI: 10.1080/00222895.2014.891970 To link to this article: http://dx.doi.org/10.1080/00222895.2014.891970
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Journal of Motor Behavior, Vol. 46, No. 4, 2014 C Taylor & Francis Group, LLC Copyright
RESEARCH ARTICLE
An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden Chi-Shin Hwang1,2, Ho-Hsiu Weng3, Li-Fen Wang3, Chon-Haw Tsai4, Hao-Teng Chang5,6
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1 School of Medicine, National Yang Ming University, Taipei, Taiwan. 2Department of Neurology, Taipei City Hospital–Zhong Xiao Branch, Taiwan. 3Department of Nursing, Taipei City Hospital–Zhong Xiao Branch, Taiwan. 4Department of Neurology, China Medical University Hospital, Taichung, Taiwan. 5Graduate Institute of Basic Medical Science, College of Medicine, China Medical University, Taichung, Taiwan. 6Department of Computer Science and Information Engineering, Asia University, Taichung, Taiwan.
Dietz, 2007). Fortunately, most ALS patients those are totally paralyzed can still keep the control of their eye movements for a long period of time, which provides an opportunity for communication (Rowland & Shneider, 2001). Patients with communication obstacle often find it frustrating that people around them cannot understand their inner thoughts or feelings. When their inside is not met, emotional distress (e.g., anxiety disorder) and even mental illness (e.g., major depression) often result. These communication deficits of ALS patients have the potential to cause significant physiological and psychological inference to both the patients and the caregivers. Furthermore, caregivers of ALS patients are even at higher risk for depression and reduced quality of life. It has been reported that aggravation degrees of depression tend to be even greater in caregivers than in patients with ALS (Gauthier et al., 2007). The quality of life or caregivers of ALS patients was found to be much lower than the national average quality of life in Japan (Miyashita et al., 2011). Passage of time did not affect quality of life in ALS patients, but quality of life related to physical symptoms declined over time in their caregivers Roach, Averill, Segerstrom, & Kasarskis, 2009). The WHO determines quality of life by analyzing parameters associated with cognition, emotion (positive and negative), and health (physical and mental; Yao, Chung, Yu, & Wang, 2002). As such, mental illnesses are generally associated with a lower quality of life (Mendlowicz & Stein, 2000; Saarni et al., 2007). Augmentative and alternative communication systems often allow patients with communication disorders to maintain effective interactions with their family and medical team (Hemsley et al., 2001). As a result, both dignity and quality of life are improved for patients with deteriorating conditions Fried-Oken et al., 2006; Gruis, Wren, & Huggins, 2011). Unfortunately, there are very few assistive devices that are suitable for patients with ALS. Traditional phonetic boards are used most frequently (at home and in the hospital; Beukelman & Garrett, 1988), but these require caregiver’s assistance to translate the needs of the patient. Phonetic board is similar to E-Tran Board that patients can select letters with winking or blinking to deliver messages to caregivers. It is inconvenient
ABSTRACT. Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease. In some cases, patients with ALS retain a normal level of consciousness but disease progression eventually results in generalized paralysis, which first impedes and then prevents oral communication. This communication obstacle can generate a great deal of stress for the patient, family, and caregiver. Here the authors ask whether the use of an eye-tracking assistive device can improve quality of life for ALS patients and relieves burden of their primary caregivers. Subjects were divided into two groups depending on whether they used (n = 10) or did not use (n = 10) an eye-tracking assistive device. The authors assessed patients’ quality of life and severity of depression using the ALS Specific Quality of Life Instrument–Revised and the Taiwanese Depression Questionnaire, respectively. The Caregiver Burden Scale was used to assess the burden on caregivers. Our study shows that the eyetracking assistive device significantly improved patients’ quality of life, as compared with patients in the nonuser group (p < .01). The assistive device also reduced the burden on caregivers (p < .05). This is likely a result of the improvement of patient’s autonomy and more effective communication between patient and caregiver. Keywords: amyotrophic lateral sclerosis, eye-tracking assistive device, quality of life
myotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease that the World Health Organization (WHO) recognizes as one of the most important and challenging human diseases of the twenty-first century. Approximately 10% of all patients with ALS suffer from a genetically inherited form of the disease called familial ALS and the others are sporadic form (Francis, Bach, & DeLisa, 1999; Kunst, 2004). The pathogenesis of ALS remains unclear. The major underlying pathologic picture is characterized by selective loss of motor neurons in cerebral cortex, brainstem, and spinal cord. ALS usually progresses into quadriplegia and bulbar palsy concomitant with respiratory failure within 3–5 years after diagnosis (Turner, Parton, Shaw, Leigh, & Al-Chalabi, 2003). If patients are provided respiratory therapy and good medical care, however, their lives can be prolonged for many years or even decades. ALS has been recognized as a multisystemic neuronal disorder (Agosta et al., 2012); however, most patients with ALS retain clear consciousness throughout the whole course of disease. Meanwhile, the most tragic is that progressive quadriplegia with bulbar muscle atrophy causes increasing difficulty to communicate and express their daily needs. This communication obstacle of ALS patients has resulted into been classified as severe communication obstacle (Beukelman, Fager, Ball, &
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Correspondence address: Hao-Teng Chang, Graduate Institute of Basic Medical Science, College of Medicine, China Medical University, No. 91, Hsueh-Shih Road, Taichung 40402, Taiwan. e-mail: [email protected] 233
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and time-consuming. A more autonomous assistive device tracks the pupil of eye to control a computer. In this way, patients are able to express their needs without assistance from a caregiver (Miyasaka, Shoji, & Tanaka, 2011). Devices that facilitate communication between patients and caregivers could potentially increase the quality of life for both individuals. In 2010, a brain–computer interface (BCI) system was developed for ALS patients. The BCI users and their families mentioned that the system indeed improves the independence in patient’s social interactions and at work. Via the statement of several BCI users, this research concluded that BCI significantly contributes to the improvement of quality life and productivity (Sellers, Vaughan, & Wolpaw, 2010). Therefore, further development of popular computerized assistive communication devices for motor disabled people is valuable. In this study, we investigated whether an eye-tracking assistive device improves the quality of life for ALS patients. We also asked whether this device affects the burden experienced by caregivers. Methods Subjects and Devices This study was approved by the Institutional Review Board of China Medical University (CMU) Hospital. Beginning in October of 2012, 20 patients with ALS (13 men and seven women) and their 20 primary caregivers (six men and 14 women) were recruited from the Taipei City Hospital (Zhongxiao Branch) and the CMU Hospital in Taiwan. They all have no usable limb or head movement and undergo tracheostomy ventilation. An initial face-to-face survey was administered, and responses were recorded anonymously. Proxy responses were not used during the interview process, but information was sometimes conveyed to and from the patient by a caregiver. All patients with ALS were diagnosed by more than two experienced neurologists as clinically definite sporadic ALS (according to the El Escorial criteria; Brooks, Miller, Swash, & Munsat, 2000; Radunovi´c, Mitsumoto, & Leigh, 2007). The clinical severity of each patient was determined using the Revised ALS Functional Rating Scale (ALSFRS-R; Brooks et al., 1996; Cedarbaum & Stambler, 1997). Twenty subjects with ALS who only used a phonetic board for communication before this case-control study were arbitrarily divided into two groups: 10 patients (with their primary caregivers), called user group, those who would use an eye-tracking assistive device for six months in this study; and 10 patients (with their primary caregivers), called the nonuser group, those who continued to use a phonetic board for communication (i.e., patients of nonuser group never used any computer-assistive communication devices). The baseline data of quality of life for each subject was measured before this study. All the 20 patients with ALS have clear consciousness and can clearly express their requests to their caregiver. The informed consent was agreed by all enrolled individuals including subjects with ALS and their caregivers in this study. 234
The eye-tracking communication assistive devise used in this study were provided by Spring Track, Utechzone Co., Ltd (Taipei, Taiwan). This machine used a noncontact optical eye tracker for measuring a patient’s eye positions and eye movement. Using infrared, the light reflected from retina through the pupil is sensed by a specially designed optical sensor. Applying this pupil-tracking technology, the machine can calculates where patients are looking at on the screen and then the functions of the computer can be activated by gaze or blink of the patient. Through this way, patients can easily operate the computer by eye gazing. Via this computer, a patient can go on internet and send e-mail. There is no need to wear or hold anything on the patient side. Patients usually take only a few days to completely familiar with the operation of this eye-tracking assist devise and the computer. Characteristics of the Subjects Demographic information and clinical characteristics of the sample groups are shown in Table 1. The patients with ALS (along with their primary caregivers) were divided into two groups of equal size. The disease duration since the onset of first clinical symptom was 23.5 months for user group and 24.5 months for nonuser group. The clinical severity of ALS was evaluated using the ALSFRS-R. Mean ALSFRS-R scores were 3.2 for the user group (range = 1–5, SD = 1.66) and 2.9 for the nonuser group (range = 1–7, SD = 1.87). The average age was 51.5 years for the user group (range = 40–66 years, SD = 7.72 years) and 58.2 years old for the nonuser group (range = 38–85 years, SD = 11.36 years). Within the user group, 30% of the patients and caregivers had at least college-level of education. For the nonuser group, 60% of the patients and 40% of the caregivers attained this level of education. The total amount of time spent on using the eye-tracking assistive device for patients was: 1–3 h/day in 40% of the patients, 3–5 hr/day in 40% of the patients, and 5–8 hr/day in 20% of the patients. In the rest of time, they used phonetic board for communication, if needed. The spouse of the patient served as the primary caregiver for 70% and 90% of the user and nonuser patients, respectively. Questionnaires In this case-control study, two validated questionnaires were used for evaluation of ALS patients before and after the intervention period of this research. These were the Taiwanese Depression Questionnaire (TDQ; with approval from the John Tung Foundation, Taiwan; Lee, Yang, Lai, Chiu, & Chau, 2000) and the Revised ALS Specific Quality of Life Instrument (ALSSQOL-R; Simmons et al., 2006). The TDQ incorporates cultural features that are helpful for Taiwanese patients. The TDQ assesses physical, sentimental, and cognitive indicators with 18 items on a 4-point Likert-type scale. Scores for each response range from 0 (never or very infrequently) to 3 (often or always). As such, overall test scores range from 0 to 54, with higher scores indicating a greater degree of depression. Journal of Motor Behavior
Improvement of the Quality of Life for ALS
Results
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TABLE 1. Characteristics of the Patients and Caregivers Characteristic Patients
User (n = 10)
Nonuser (n = 10)
ALSFRS score Age (years) Disease course (months) Gender (female/male) Education (college degree or higher) Married Assistive-device usage
3.2 (1–5)a 51.5 (40–66)a 23.5 6/4 3
2.9 (1–7)a 58.2 (38–85)a 24.5 1/9 6
7 4 (1–3 hr/day)b 4 (3–5 hr/day) 2 (5–8 hr/day) (n = 10) 55.9 (27–82)a 6/4 3
10
(n = 10) 54.6 (38–62)a 8/2 4
8 7
9 9
Caregivers Age (years) Gender (female/male) Education (college degree or higher) Married Spouse of the patient
Note. Values in parentheses indicate the range. Assistive-device used times included amusements (e.g., internet access, listening to the radio, watching videos). ALSFRS = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale.
The ALSSQOL-R was developed by the Philadelphia College of Osteopathic Medicine to specifically assess quality of life for ALS patients. There are six domains within the ALSSQOL-R, those are negative emotion, interaction with people and the environment, religiosity, intimacy, physical symptoms, and bulbar function. The ALSSQOL-R is a 50item disease-specific questionnaire that is completed by the ALS patients. Each item of the ALSSQOL-R is rated by the individual using an 11-point Likert-type scale, ranging from 0 (least desirable situation) to 10 (most desirable situation). As such, lower scores indicate worse quality of life. The Caregiver Burden Scale (CBS) is a validated questionnaire for caregivers (Poulshock & Deimling, 1984; Robinson, 1983; Zarit, Reever, & Bach-Peterson (1980). The CBS assesses the caregiver’s satisfaction within four domains (physical and personal time, family relations, emotional and financial burdens, and psychological burden). The self-rating 4-point Likert-type scale ranges from 0 (never) to 3 (often). A high score indicates this caregiver of an ALS patient is experiencing greater pressure. Statistical Analysis The data were analyzed using Excel (Microsoft, Seattle, WA) and GraphPad Prism software (GraphPad Software, Inc., La Jolla, CA). For each group, the median value is presented, and error bars indicate interquartile range. For statistical comparisons between two groups, the two-tailed Student’s t test was used.
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Before intervention of the eye-tracking assistive device, baseline data of TDQ, ALSSQOL-R, and CBS scores for each subject in both control and experimental groups were collected and compared. Our results showed no significant difference of baseline data between control and experimental groups.
TDQ Scores The TDQ is proverbially useful for assessing depression among Taiwanese patients. Our study showed that TDQ score of patients were significantly improved after the intervention of eye-tracking assistive device for ALS patients. The median TDQ score was higher for the group of patients who did not use the eye-tracking assistive device than for the user group (p < .001; Figure 1A). This indicates that nonuser patients were generally more depressed. Sentimental and cognitive indicators affected the total TDQ scores most dramatically (p < .01 and p < .001, respectively; Figures 1B and 1C). As such, the communication device may help patients express their needs more clearly, resulting in a more comfortable daily life.
FIGURE 1. Distributions of Taiwanese Depression Questionnaire (TDQ) scores for amyotrophic lateral sclerosis patients. TDQ scores were compared between patients that used an eye-tracking assistive device (user) and patients that did not use the assistive device (nonuser). Results are shown for the total TDQ score (A), the TDQ score associated with sentiment indicators (B), and the TDQ score associated with cognitive indicators (C). For each graph, the middle horizontal bar indicates the median value, whereas the top and bottom horizontal bars indicate the interquartile range. ∗∗ p < .01. ∗∗∗ p < .001.
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ALSSQOL-R Scores
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The ALSSQOL-R was used to evaluate the overall quality of life for individuals with ALS. The use of an eyetracking assistive device resulted in higher ALSSQOL-R average scores, as compared with nonuser patients (p < .001; Figure 2A). This indicates that individuals in the user group had a better quality of life. We also evaluated scores associated with three domains: negative emotion, interaction with people and environment, and intimacy. For each domain, the scores were significantly higher in patients who used the eye-tracking assistive device (p < .001, p < .01, and p < .01, respectively; Figures 2B–D). This indicates that the eyetracking communication device can improve the quality of life for ALS patients. CBS Scores The CBS was used to measure the effect of eye-tracking assistive device on caregivers. After the use of eye-tracking assistive device for ALS patients, CBS scores were significantly improved for caregivers associated with the users (p < .05; Figure 3A). This indicates that when a patient used the eye-tracking assistive device the burden of care was reduced for the caregiver. The final total CBS scores were primarily influenced by significant difference in two domains: physical and personal time burden, and family relations burden (p < .05 and p < .05, respectively; Figures 3B and 3C).
FIGURE 2. Distributions of Revised Amyotrophic Lateral Sclerosis Specific Quality of Life Instrument (ALSSQOL-R) scores for amyotrophic lateral sclerosis patients. ALSSQOLR scores were compared between patients that used an eyetracking assistive device (user) and patients that did not use the assistive device (nonuser). Results are shown for the total ALSSQOL-R score (A), the ALSSQOL-R score associated with negative emotion (B), the ALSSQOL-R score associated with interaction (C), and the ALSSQOL-R score associated with intimacy (D). For each graph, the middle horizontal bar indicates the median value, whereas the top and bottom horizontal bars indicate the interquartile range. ∗∗ p < .01. ∗∗∗ p < .001.
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FIGURE 3. Distribution of Caregiver Burden Scale (CBS) scores for caregivers of amyotrophic lateral sclerosis patients. CBS scores of caregivers were compared between user group and nonuser group. Results are shown for the total CBS score (A), the CBS score associated with physical and personal time burdens (B), and the CBS score associated with the burden of family relations (C). The middle horizontal bar indicates the median value, whereas the top and bottom horizontal bars indicate the interquartile range. ∗ p < .05.
Discussion ALS is a neurodegenerative disease that eventually causes quadriplegia. Without the ability to move, patients experience considerable obstacles to both oral and limb-based modes of communication. These communication barriers can affect the quality of life for patients, families, and caregivers. Patients with end-stage ALS used to communicate with healthcare professionals using assistive technologies (Doyle & Phillips, 2011). Recently, a review articles concluded that eye-gaze independent Electroencephalography (EEG)–based BCI presented a high accuracy and speedy communication for patients (Riccio, Mattia, Simione, Olivetti, & Cincotti, 2012). However, these interfaces were highly demanding in terms of attention and memory load for patients, and cannot be popularized. A report employed the Individually Prioritized Problem Assessment (Wessels et al., 2000) scale to evaluate the quality of life for ALS patients with or without using eye-tracking communication device. Caligari and colleagues (2013) mentioned that with application of the eye-tracking communication device (Mytobii© P10 Eye Tracker, Tobii Technology, Danderyd, Sweden; iAble© software ver. 1.2, SRLabs Co., Milan, Italy), the quality of life for ALS patients was improved in the group those using the device as compared with patients without using the device (Caligari, Godi, Guglielmetti, Franchignoni, & Nardone, 2013). Therefore, it is important to link the communication technology with the position of patient’s eye as the cursor of computer. In this way, patients can communicate through the computer via gaze control (Ball et al., 2010; Journal of Motor Behavior
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Improvement of the Quality of Life for ALS
Gibbons & Beneteau, 2010). Compared with other communication technologies, the eye-tracking assistive device is the least fatiguing for ALS patients (Gibbons & Beneteau, 2010). Our study, using both the TDQ and the ALSSQOL-R for evaluation, revealed that patients with ALS who did not use the eye-tracking assistive device were generally more depressed and had a lower quality of life. A number of factors affected this quality of life for these patients, including their physical condition and perceived qualities of sentiment (e.g., felt tantrum, sad and bother), cognition (e.g., concentration, confidence, negative thoughts), intimacy, and interactions (with people and the environment). Scores for these factors were reliably higher in the user group than the nonuser group. The eye-tracking assistive device seems to enhance the ability of a patient to interact socially, to participate in the community, and to make personal choices about her or his care. These kinds of social interactions generally increase confidence and allow a patient to face the illness with more optimism (Kivimaki et al., 2005). ALS disease progression makes the patient more and more dependent on caregivers to accomplish everyday tasks. This means that the burden and time required caring for the patient gradually increases. A previous study revealed that as a patient with ALS deteriorates, the caregiver experiences significantly greater time-dependence and social-restriction burdens (Bromberg & Forshew, 2002; Goldstein et al., 1998; Goldstein, Atkins, Landau, Brown, & Leigh, 2006). Here we demonstrate that the use of an eye-tracking assistive device improves CBS scores in two domains: physical and personal time and family relations. By relieving these major burdens, the primary caregiver, therefore, had more time to participate in social activities and to take care of other family members. Our study has shown that the use of an eye-tracking assistive device has positive benefits for both ALS patients and their caregivers. This result is similar with the conclusion of another recent report (Galigari et al., 2013). There are some limitations of our study. Although, no matter patients or their caregivers, our research results have shown significant improvement of life quality in the user group as compared with nonuser group, the sample size was relatively small. Another limitation is although we tried our best to randomize our experimental and control groups, some patients’ autonomy of jointing the different groups still have some inference during our initial grouping. The other limitation of this study is the average education level of ALS patients in nonuser group is significantly higher than that of user group. This could be related to a cause of higher final TDQ scores in our nonuser group. However, the subjects of either users or nonusers groups have suffered from ALS for around two years and they all used phonetic board as their daily communication tool in the past few years. The initial baseline TDQ scores are similar between the two groups. There are some limitations of using eye-tracking assistive device for ALS patients. First, the eye-tracking assistive device is too bulky to move with wheelchair. Second, the course of ALS is progressive, before completely paralyzed, the 2014, Vol. 46, No. 4
patients will rather to use their usable limb to operate conventional computer for communication. Third, eyeballs stability and control ability is necessary for using eye-tracking assistive device. Although most quadriplegic ALS patients can still keep the control of their eye movement for years, in the long run, they will lose this ability, which will prohibit their use of eye-tracking assistive device. Meanwhile, the device cannot smoothly detect the position of the pupil if the patient has nystagmus. Finally, the high cost of a computerized eyetracking assistive device still affects its popularity, although some strategies including price decrease, renting, and donation programs are going on in many nonprofit organizations. Holistic health care, including physical and mental care, is the gold standard for treatment of patients with ALS (Radunovi´c et al., 2007). Among these treatment strategies, how to improve the patients’ autonomy and their communication efficiency is a very important issue. Effective communication surely can improve patients’ autonomy, independency and satisfaction of life. We wish our study results could push government inputting more attention to the holistic health care of ALS patients, especially the improvement of communication ability and autonomy of ALS patients. Hopefully more patients can be benefited from this new technology in the near future. ACKNOWLEDGMENTS The authors wish to thank the patients and caregivers who took part in this study for sharing their experiences. They also would like to thank Utechzone Co., Ltd, for providing the eye-tracking assistive devices that were used for this study. Chi-Shin Hwang designed the experiments and drafted the manuscript. Ho-Hsiu Weng and Li-Fen Wang contacted and interviewed subjects, and finalized biostatistics. ChonHaw Tsai recruited the subjects. Hao-Teng Chang designed the experiments, coordinated this project, and wrote the manuscript. FUNDING This project was supported in part by Department of Health in Taiwan (DOH102-TD-B-111-004). One research assistant, Mr. Chien-Ming Wang (an MS researcher of CMU) who helped us to conduct interviews, was funded by a company (Utechzone Co., Ltd). This company, however, did not participate in the preparation of the article, nor did it financially support this part of the project. REFERENCES Agosta, F., Valsasina, P., Riva, N., Copetti, M., Messina, M. J., Prelle, A., . . . Filippi, M. (2012). The cortical signature of amyotrophic lateral sclerosis. PLoS One, 7(8), e42816. Ball, L., Nordness, A., Fager, S., Kersch, K., Pattee, G., & Beukelman, D. (2010). Eye-gaze access of AAC technology for persons with amyotrophic lateral sclerosis. Journal of Medical Speech Language Pathology, 18, 11–23. 237
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