Impairment, Activity, Participation, Life Satisfaction, and Survival in Persons With Locked-In Syndrome for Over a Decade

Doble, Jennifer E.; Haig, Andrew J.; Anderson, Christopher; Katz, Richard T.

doi:10.1097/00001199-200309000-00005

Cited by 101 publications

(109 citation statements)

References 12 publications

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“…Doble et al 11 found that patients with locked-in syndrome, including people with an SCI experience an increase in communication with family and friends at 11 years related to technology use. 10 At least 52% of respondents increased the time they spent using the Internet after injury, and 76% of people with an SCI used the Internet for social entertainment in our study.…”

Section: Discussionmentioning

confidence: 99%

The effects of using the internet on the health-related quality of life in people with spinal cord injury: a controlled study

Celik¹,

Öneş²,

Çelik³

et al. 2014

Spinal Cord

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Study design: Prospective cohort study. Objectives: To compare the health-related quality of life (HRQoL) in people with spinal cord injury (SCI) who use the Internet versus those who don't and with a control group of able-bodied individuals. To investigate the frequency of Internet usage before and after injury. To evaluate the differences in terms of demographic features of both groups, analyze the variation in the Internet usage pattern of people with SCI before and after the injury. Setting: Istanbul, Turkey. Methods: A total of 60 people with SCI (38 Internet users, 22 nonusers) were included in the study. The control group consisted of 33 healthy persons of similar age and sex. The HRQoL was evaluated with the SF-36 Health Survey. Results: The scores of all the subscales of the SF-36, except vitality, were significantly lower in people with SCI than those of the controls'. The bodily pain subscale and physical component scores were found to be significantly higher in people with SCI using the Internet than the nonuser group with SCI (Po0.05). The Internet usage frequency increased significantly in people with SCI after injury (Po0.05). A significant correlation was found between time since injury and Internet use (r ¼ 0.365, P ¼ 0.007). Conclusion: Although HRQoL scores were lower in people with an SCI, the physical status component score was better in the Internet user SCI group. As there is a significant increase in the time spent online after injury, the Internet could be an effective modality to contact and educate people with an SCI.

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Section: Discussionmentioning

confidence: 99%

The effects of using the internet on the health-related quality of life in people with spinal cord injury: a controlled study

Celik¹,

Öneş²,

Çelik³

et al. 2014

Spinal Cord

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“…Mortality is indeed high in acute LIS of vascular origin (87% within the first 4 months; Patterson and Grabois, 1986) and mean survival rate in ALS is 3-5 years with only a short period of time in LIS (Ludolph and Dengler, 1999). However, individuals in LIS may survive for long periods of time, sometimes exceeding 20 years (Doble et al, 2003;Leó n-Carrió n et al, 2002;Laureys et al, 2005). Doble et al (2003) reported a 10-year survival of 83% and 20-year survival of 40% in 29 stabilized (i.e., surviving more than 1 year) LIS patients.…”

Section: Introductionmentioning

confidence: 99%

“…However, individuals in LIS may survive for long periods of time, sometimes exceeding 20 years (Doble et al, 2003;Leó n-Carrió n et al, 2002;Laureys et al, 2005). Doble et al (2003) reported a 10-year survival of 83% and 20-year survival of 40% in 29 stabilized (i.e., surviving more than 1 year) LIS patients. Data from the French Association for Locked-In Syndrome (ALIS; www.alis-asso.fr) on 250 patients showed that mean time spent in LIS was 674 years (range 14 days-27 years; Laureys et al, 2005).…”

Section: Introductionmentioning

confidence: 99%

Life can be worth living in locked-in syndrome

Lulé

Zickler

Häcker

et al. 2009

Progress in Brain Research

183

104

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The locked-in syndrome (LIS) describes patients who are awake and conscious but severely deefferented leaving the patient in a state of almost complete immobility and loss of verbal communication. The etiology ranges from acute (e.g., brainstem stroke, which is the most frequent cause of LIS) to chronic causes (e.g., amyotrophic lateral sclerosis; ALS). In this article we review and present new data on the psychosocial adjustment to LIS. We refer to quality of life (QoL) and the degree of depressive symptoms as a measure of psychosocial adjustment. Various studies suggest that despite their extreme motor impairment, a significant number of LIS patients maintain a good QoL that seems unrelated to their state of physical functioning. Likewise, depression is not predicted by the physical state of the patients. A successful psychological adjustment to the disease was shown to be related to problem-oriented coping strategies, like seeking for information, and emotional coping strategies like denial -the latter may, nevertheless, vary with disease stage. Perceived social support seems to be the strongest predictor of psychosocial adjustment. QoL in LIS patients is often in the same range as in age-matched healthy individuals. Interestingly, there is evidence that significant others, like primary caregivers or spouses, rate LIS patients' QoL significantly lower than the patients themselves. With regard to depressed mood, ALS patients without symptoms focus significantly more often on internal factors that can be retained in the course of the disease contrary to patients with depressive symptoms who preferably name external factors as very important, such as health, which will degrade in the course of the disease. Typically, ALS patients with a higher degree of depressive symptoms experience significantly less ''very pleasant'' situations. The herein presented data strongly question the assumption among doctors, health-care workers, lay persons, and politicians that severe motor disability necessarily is intolerable and leads to end-of-life decisions or euthanasia. Existing evidence supports that biased clinicians provide less-aggressive medical treatment in LIS patients. Thus, psychological treatment for depression, effective strategies for coping with the disease, and support concerning the maintenance of the social network are needed to cope with the disease. Novel communication devices and assistive technology now offers an increasing number of LIS patients to resume a meaningful life and an active role in society.

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“…With the advent of better methods of communication, it is clear that, despite a high incidence of depression, most locked-in patients want antibiotics, want aggressive medical care, avoid "no-code" advanced directives, do not seek euthanasia, and want to stay alive (7). Some can return home provided there is sufficient support for their care.…”

mentioning

confidence: 99%

Unlocking communication with the nose

Grafton

2010

Proc. Natl. Acad. Sci. U.S.A.

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Impairment, Activity, Participation, Life Satisfaction, and Survival in Persons With Locked-In Syndrome for Over a Decade

Abstract: Persons with initially stable locked-in syndrome can have prolonged survival, can live in the community if there is enough support, and have some measure of quality of life.

Cited by 101 publications

References 12 publications

The effects of using the internet on the health-related quality of life in people with spinal cord injury: a controlled study

The effects of using the internet on the health-related quality of life in people with spinal cord injury: a controlled study

Life can be worth living in locked-in syndrome

Unlocking communication with the nose

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