Palliative care  in amyotrophic lateral sclerosis

Borasio, Gian Domenico; Voltz, Raymond

doi:10.1007/pl00007719

Cited by 109 publications

(76 citation statements)

References 21 publications

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“…Communication difficulties with health professionals over obtaining adequate information about diagnosis, health status, prognosis, trajectory, and treatment options were identified in several studies (22,25,38,55,62,(66)(67)(68). Caregivers in Australia and the U.K.…”

Section: Information and Communicationmentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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Section: Information and Communicationmentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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“…During the course of ALS, there is often a decline in nutritional state, which is a signifi cant and independent prognostic factor in survival [3] . Malnutrition is explained by several factors, particularly swallowing diffi culties [4] , but also loss of dexterity of the upper limbs. Constipation also plays a role, as it may contribute to appetite loss [1,4] .…”

Section: Introductionmentioning

confidence: 99%

Hypermetabolism in ALS: Correlations with Clinical and Paraclinical Parameters

Desport¹,

Torny²,

Lacoste³

et al. 2005

Neurodegener Dis

212

162

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Despite a reduction in fat-free mass (FFM), a hypermetabolism has been reported with an average of 10% in amyotrophic lateral sclerosis (ALS) patients as compared with a healthy population. The objectives of this study were to confirm the level of hypermetabolism determined by using indirect calorimetry in 168 patients with a probable or a definite ALS and to study correlations with survival. Consecutive evaluations of resting energy expenditure (REE) were performed from diagnosis to the proximity of death in 44 ALS patients. Differences with the calculated value determined a ΔREE. FFM was given by bioimpedance. At T₁, REE was significantly increased by an average of 14% as compared with the calculated value. 62.3% of ALS patients were considered as hypermetabolic. REE was correlated in univariate analysis with age, sex, clinical form at onset, presence of a denutrition, weight, FFM, phase angle and ALS Functional Rating Scale (ALSFRS). In multivariate analysis, REE was linked to age and FFM. ΔREE was correlated in univariate analysis with sex, phase angle and manual muscle testing (MMT). In multivariate analysis, age and sex remained significantly correlated. During progression of ALS, REE levels remained higher than calculated values with a trend to decrease at proximity of death, whereas FFM remained stable. From T₁, survival was linked to MMT, ALSFRS, vital capacity, REE and phase angle. We confirmed the existence of a stable hypermetabolic state in ALS which depends mainly on age, sex and FFM. REE is a prognostic factor for survival in univariate analysis.

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“…The supplementation of this vitamin, with quantity still not defined, is expected to improve the nutritional profile of subjects with ALS (Borasio;Voltz, 1997). Oral supplementation with creatine monohydrate at 3g/day showed no improvement of nutritional status in ALS.…”

Section: Nutritional Supportmentioning

confidence: 98%

Nutritional Care in Amyotrophic Lateral Sclerosis: An Alternative for the Maximization of the Nutritional State

Carvalho-Silva¹

2012

Amyotrophic Lateral Sclerosis

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Palliative care in amyotrophic lateral sclerosis

Cited by 109 publications

References 21 publications

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Hypermetabolism in ALS: Correlations with Clinical and Paraclinical Parameters

Nutritional Care in Amyotrophic Lateral Sclerosis: An Alternative for the Maximization of the Nutritional State

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