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Moons, Philip; Marquet, Kristel; Budts, Werner; Geest, Sabina De

doi:10.1186/1477-7525-2-27

Cited by 67 publications

(34 citation statements)

References 17 publications

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“…In contrast, advanced-stage carci noma patients show a subjective QoL that seems significantly lower as compared to ALS patients (Fegg et al, 2005) and which continues to decline as the disease leads to progressive physical impairment (Frick et al, 2007;Jenewein et al, 2008). Patients with severe paralysis leading in its most extreme form to a LIS seem to experience a subjective QoL that is better than that of patients with terminal cancer, and comparable to that of patients with nonterminal chronic disease (McGee et al, 1991;Moons et al, 2004). The published literature and the data here presented (summarized in Table 1) suggest that patients at any stage of physical restrictions can subjectively experience a high QoL.…”

Section: Quality Of Lifementioning

confidence: 87%

Life can be worth living in locked-in syndrome

Lulé

Zickler

Häcker

et al. 2009

Progress in Brain Research

163

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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Section: Quality Of Lifementioning

confidence: 87%

Life can be worth living in locked-in syndrome

Lulé

Zickler

Häcker

et al. 2009

Progress in Brain Research

163

104

View full text Add to dashboard Cite

show abstract

“…Moons et al [32] investigated the association between actual status (rating) and relative importance (weighting) of the nominated domains and found the correlation coefficient to be small (r = .26). Another study correlated the individually assessed weights and ratings of the five cues when ordered from the most to the least important, and found a stronger association between weights and ratings of domains weighted with less importance [50].…”

Section: Construct Validitymentioning

confidence: 97%

“…Only one paper reported coefficients for age in two samples, which were weak and negligible [26]. Criterion validity examined by study of the content of areas was examined in three studies [32,34,42]. Moons et al [32] found that unemployed respondents reported lower functioning of the cues 'job/education' and 'financial means' than their employed counterparts.…”

Section: Criterion-based Validitymentioning

confidence: 98%

“…Missing data were reported in 10 studies [22,24,25,29,32,34,35,37,43,52] and ranged from 8 to 83% of participants failing to complete the procedure. Reported reasons for this included confusion, distress, fatigue and difficulty understanding the task.…”

Section: Feasibilitymentioning

confidence: 98%

“…Discriminant validity was measured by correlations between the SEIQoL Index score and self-reported measures of health and functional status in eight studies (Table 3) [20,25,26,28,32,35,42,43]. Four of the coefficients were moderate (.30-.49), while eight were weak (r \ .30).…”

Section: Construct Validitymentioning

confidence: 99%

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The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW

et al. 2009

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The SEIQoL-DW appears to be a feasible and valid instrument. The lack of association between the Index score and health, functional status, demographic and clinical parameters may be explained by the instrument's focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life, despite having health problems. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended.

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Health‐related quality‐of‐life scales in Parkinson's disease: Critique and recommendations

et al. 2011

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Health-related quality of life is an important patient-reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health-related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health-related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health-related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives-use in Parkinson's disease, use by multiple research groups, and clinimetric properties-a final classification as "recommended," "suggested," or "listed" was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36-Item Short-Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39-Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease-Psychosocial) reached the level of "recommended." The 39-item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life-Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are "suggested." With a little additional effort in completing the stipulated requirements, they could reach the "recommended" level. At present there is a wide variety of health-related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment.

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Untitled

Cited by 67 publications

References 17 publications

Life can be worth living in locked-in syndrome

Life can be worth living in locked-in syndrome

The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW

Health‐related quality‐of‐life scales in Parkinson's disease: Critique and recommendations

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