Evaluation of quality of life in individuals with severe chronic motor disability: A major challenge

Rousseau, Marie-Christine; Baumstarck, Karine; Villemeur, Thierry Billette de; Auquier, Pascal

doi:10.5582/irdr.2016.01017

Cited by 15 publications

(13 citation statements)

References 72 publications

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“…Alternatively, perhaps patients normalize their experience and are able to cope with all sorts of disability, coping far better (and with higher QoL) than they ever would have imagined. 54 Future research could potentially further delineate this. Caregiver burden, depression, and anxiety were demonstrated to have a negative influence on caregiver QoL.…”

Section: Discussionmentioning

confidence: 97%

Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

Dixit

Spreadbury

Orlando³

et al. 2020

J Geriatr Psychiatry Neurol

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Background: Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health. Methods: There were 52 participants (26 YoD patient–caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life–short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer’s Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating). Results: Patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD ( P = .001). Patient QoL self-reports for the WHOQOL-BREF ( P < .01) and single-item QoL ( P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure. Discussion: Patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.

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Section: Discussionmentioning

confidence: 97%

Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

Dixit

Spreadbury

Orlando³

et al. 2020

J Geriatr Psychiatry Neurol

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“…Scores according to health or socioeconomic status could reduce bias of the results. One of the difficulties encountered when interpreting a quality of life score for clinicians is the lack of norms values [24,25].…”

Section: Discussionmentioning

confidence: 99%

Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study

et al. 2019

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BackgroundPolyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents’ QoL.MethodWe conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.ResultsThe QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents’ QoL were financial issues, health status, and coping strategies. The PLH individuals’ health status was not associated with parents’ QoL.ConclusionsSome QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.

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“…[4][5][6][7][8][9] Given the increased likelihood of surviving the initial injury and having a prolonged life expectancy among patients with SCI, an improved quality of life (QOL) has become an increasingly important target in post-SCI rehabilitation practice. 3, [5][6][7][8][9][10][11][12] Accordingly, QOL assessment become a valuable index to evaluate the success of rehabilitation interventions, progression of SCI and the additional burden of secondary co-morbidities. 10,13 However, there remains a controversy regarding the association of spasticity with QoL in the literature with an indication of poorer QoL in SCI patients with more severe spasticity in some studies, [14][15][16][17] whereas lack of any association revealed between spasticity and QoL in other studies.…”

Section: Introductionmentioning

confidence: 99%

Assessment of quality of life in relation to spasticity severity and socio-demographic and clinical factors among patients with spinal cord injury

Vural

Yalçınkaya

Çelik

et al. 2018

The Journal of Spinal Cord Medicine

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Objective: To assess the impact of spasticity severity as well as socio-demographic and clinical factors on quality of life (QOL) and to identify factors predicting poor QOL among patients with spinal cord injury (SCI) Design: Descriptive cross-sectional study. Setting: Tertiary care clinic in Istanbul, Turkey. Participants: A total of 110 patients with SCI (mean (SD) age: 43.8 (14.7) years, 58.2% were males) were enrolled. Assessments: The American Spinal Injury Association (ASIA) Impairment Scale (AIS), Modified Ashworth Scale (MAS) and Turkish version of the World Health Organization Quality of life questionnaire (WHOQOL-BREF) were utilized to determine the SCI category, severity of spasticity and QOL scores, respectively. Outcome measures: The WHOQOL-BREF scores were evaluated with respect to the severity of spasticity, aetiology and duration of SCI, AIS category and method of bladder management. Results: The mean (SD) physical health (41.9 (15.3) vs. 46.5 (10.9), P = 0.029), social relationships (45.6 (20.2) vs. 53.8 (17.3), P = 0.025) and total WHOQOL-BREF scores were significantly lower in patients with more severe spasticity. Multivariate linear regression analysis revealed that severity of spasticity was a significant predictor of decreased WHOQOL-BREF total scores, physical domain scores and social relations domain scores by 11.381 (P = 0.007), 11.518 (P = 0.005) and 17. 965 (P = 0.004), respectively. Conclusion: In conclusion, addressing QOL in relation to severity of spasticity for the first time among Turkish SCI patients, our findings revealed a negative impact of the spasticity severity on the WHOQOL-BREF scores, particularly for physical health and social relationship domains.

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Evaluation of quality of life in individuals with severe chronic motor disability: A major challenge

Cited by 15 publications

References 72 publications

Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study

Assessment of quality of life in relation to spasticity severity and socio-demographic and clinical factors among patients with spinal cord injury

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