Evaluation of quality of life in complete locked-in syndrome patients.

@article{Rousseau2013EvaluationOQ,
  title={Evaluation of quality of life in complete locked-in syndrome patients.},
  author={M. Rousseau and S. Pietra and M. Nadji and T. Billette de Villemeur},
  journal={Journal of palliative medicine},
  year={2013},
  volume={16 11},
  pages={
          1455-8
        }
}
BACKGROUND There are few studies where quality of life (QOL) and contributive factors are assessed in locked-in syndrome (LIS) patients with complete physical and functional disability and dependence on caregivers. OBJECTIVE The study's objective was evaluation of QOL in LIS patients. DESIGN We have compared QOL in LIS patients with QOL in healthy controls (control group). SETTING/SUBJECTS We have included 19 LIS patients, most of them with vascular etiologies or terminal course of ALS… Expand
Locked-In Syndrome: Case Report and Discussion of Decisional Capacity.
TLDR
The case of a 54-year-old man with LIS, determined to be decisional during the acute hospitalization, and he elected for life-prolonging care is presented. Expand
Impact of the Japanese Disability Homecare System on ALS Patients’ Decision to Receive Tracheostomy with Invasive Ventilation
Research has documented the influence of ALS patients families’ attitudes on patients’ decision to accept or reject TIV (tracheostomy with invasive ventilation), a treatment that in many cases willExpand
Phenomenology of the Locked-In Syndrome: an Overview and Some Suggestions
There is no systematic knowledge about how individuals with Locked-in Syndrome (LIS) experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience asExpand
Nationwide survey of 780 Japanese patients with amyotrophic lateral sclerosis: their status and expectations from brain–machine interfaces
TLDR
This is the first large-scale survey to reveal the present status of patients with ALS and probe their interests and expectations regarding BMIs, which should provide wide-ranging and high-performance support that can easily be used by severely disabled elderly patients withALS. Expand
A Fate Worse Than Death? The Well-Being of Patients Diagnosed as Vegetative With Covert Awareness
Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of theseExpand
Consciousness in the Locked-in Syndrome
Patients in a locked-in syndrome (LIS) are selectively de-efferented (i.e., they have no means of producing speech, limb, or face movements). Usually the anatomy of the responsible lesion in theExpand
Surgical, ethical, and psychosocial considerations in human head transplantation.
TLDR
The purpose of this target article, the complementary manuscript focused on immunological issues in BHT, and the accompanying Commentaries by scholars and practitioners in medicine, immunology, and bioethics is to review major surgical and psychosocial-ethical and immunological considerations surrounding body-to-head transplantation. Expand
Withholding and Withdrawing Life-Sustaining Treatment
TLDR
This chapter discusses ethical considerations around withholding and withdrawing life-sustaining treatments with a focus on neurologic disease, and presents a goals of care-based algorithm that may help make clinical decisions near the end of life. Expand
Sonnet XXX: Love, Dignity, and Dying †
  • E. Ely
  • Psychology, Medicine
  • The Linacre quarterly
  • 2016
TLDR
The end-of-life path of a patient with amyotrophic lateral sclerosis and the courageous faith that she demonstrated in the face of her illness is explored and the hard-core conversations that took place at her bedside are explored in light of Catholic moral teaching. Expand
Primary care for adolescents with developmental disabilities.
TLDR
Careful descriptions of a patient's baseline traits and function are critical, not only to assist in person centered planning processes, but to ensure that new caregivers and clinicians have the information they need to recognize changes in function or behavior that can signal illness. Expand
...
1
2
...

References

SHOWING 1-10 OF 33 REFERENCES
Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis.
TLDR
Individual QOL appears to be largely independent from physical function in severely ill patients with ALS, and assessment of individual QOL may have an interventional value in palliative care. Expand
Quality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristics.
TLDR
The unique features of the psychosocial factors, personality traits, and spiritual factors, in addition to disease symptoms, need to be identified and discussed with patients and families throughout the illness. Expand
Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis
TLDR
The validity of the SEIQoL-DW was rated higher than that of the SIP and of the SF-36, and the emotional distress caused by them, which should prompt further discussion and investigation on the most appropriate way to assess QoL in patients with ALS. Expand
Life can be worth living in locked-in syndrome.
TLDR
New data on the psychosocial adjustment to locked-in syndrome are presented and 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 is strongly questioned. Expand
Quality of life in ALS depends on factors other than strength and physical function
TLDR
QOL, as assessed by the patient with ALS, does not correlate with measures of strength and physical function, but appears to depend on psychological and existential factors, and thus may be measured well by the MQOL scale. Expand
Correlates of Quality of Life in people with motor neuron disease (MND)
  • L. Goldstein, L. Atkins, P. Leigh
  • Psychology, Medicine
  • Amyotrophic lateral sclerosis and other motor neuron disorders : official publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases
  • 2002
TLDR
Findings support recent observations that individuals' ratings of their QoL cannot simply be equated with their physical impairment and functional limitations, and that support systems may be important. Expand
Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers
TLDR
This study confirms that ALS has a negative impact on QoL in both patients and caregivers, however, caregivers who present lowerQoL levels are not always those who have to look after the most physically or psychologically impaired patients. Expand
Depression and quality of life in patients with amyotrophic lateral sclerosis.
TLDR
It is shown that ALS patients can experience a satisfactory quality of life without depressive manifestations even if they are severely physically impaired, including in the terminal phase. Expand
A cross sectional study on determinants of quality of life in ALS
TLDR
This study indicates that health related QoL measures are not adequate to assessQoL in patients with ALS, because their appreciation of Qo L mainly relies on psychological, supportive, and spiritual factors. Expand
Electronic aids to daily living and quality of life for persons with tetraplegia
TLDR
EADLs appear to contribute to the experience of greater subjectiveQOL for persons with severe physical disability from high SCI, and the QOLP-PD was found to be a valid measure of QOL for this population. Expand
...
1
2
3
4
...