The Dynamics of Quality of Life in ALS Patients and Caregivers

Roach, Abbey R.; Averill, Alyssa J.; Segerstrom, Suzanne C.; Kasarskis, Edward J.

doi:10.1007/s12160-009-9092-9

Cited by 60 publications

(58 citation statements)

References 55 publications

(68 reference statements)

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“…Our findings are in line with those reported by Cohen et al 42 in subjects with terminal illness, where improvement in HRQOL went beyond symptom control following admission to a palliative care unit, and with findings from Roach et al 43 in subjects with amyotrophic lateral sclerosis, suggesting that in subjects under critical conditions, life goals, hopes, and expectations are similarly independent from the diseases. In general, the current uncontrolled study confirms that long-stay ICU survivors tend to improve their HRQOL, as reported previously by other authors in compromised subjects with different pathologies.…”

Section: Discussionsupporting

confidence: 93%

Impact of Clinical and Quality of Life Outcomes of Long-Stay ICU Survivors Recovering From Rehabilitation on Caregivers' Burden

et al. 2016

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BACKGROUND: The objective of this work was to evaluate the time course of clinical and healthrelated quality of life outcomes of long-stay ICU survivors' and caregivers' burden. METHODS: The study included 23 subjects of mixed diagnosis (66 ؎ 11 y, body mass index 26.5 ؎ 5.6 kg/m 2 ) with a recent episode of acute respiratory failure needing in-hospital rehabilitation. Subjects and caregivers were evaluated at hospital discharge (T0, n ‫؍‬ 23) and 6 months later (T6, n ‫؍‬ 16). At T0 and T6, subjects' clinical status (Dependence Nursing Scale), FVC (percent-of-predicted FVC and percent-of-predicted FEV), maximum inspiratory/expiratory pressures, effort tolerance (sitto-stand, Takahashi test, 6-min walking distance), and disability (Barthel index) were evaluated. EuroQol-5D (EQ-5D), McGill Quality of Life, General Perceived Self-Efficacy Scale, and Hospital Anxiety and Depression Scale (HADS-A/HADS-D) were assessed. Caregivers' burden was measured by the Family Strain Questionnaire short form and Caregiver Needs Assessment. Correlation between subjects' clinical status and caregiver assessments was performed at T0. RESULTS: At T0, subjects showed compromised EQ-5D index (0.42 ؎ 0.28); 69% of caregivers had high Family Strain Questionnaire and moderate Caregiver Needs Assessment scores (30 ؎ 13). EQ-5D index was significantly related to Dependence Nursing Scale score (P < .001), percent-of-predicted FVC (P < .02), effort tolerance (all P < .01), disability (P < .001), and caregiver Family Strain Questionnaire score (P < .02). At T6, subjects significantly improved percent-of-predicted FVC (P < .05), maximum expiratory pressure (P < .01), effort tolerance (all P < .05), disability (P < .02), and EQ-5D index (P < .05), whereas caregivers' burden scores were unchanged. However, the percentage of caregivers with strain increased. CONCLUSIONS: In prolonged-ICU-stay survivors, EQ-5D index at hospital discharge is related to clinical status and caregivers' strain. Subjects' clinical status and EQ-5D index improves over time, but caregivers' burden remains high, suggesting the need to monitor/support caregivers.

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Section: Discussionsupporting

confidence: 93%

Impact of Clinical and Quality of Life Outcomes of Long-Stay ICU Survivors Recovering From Rehabilitation on Caregivers' Burden

et al. 2016

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“…Ambivalence over emotional expression, social constraints, and low emotional approach coping were all related to lower psychological well-being across the course of the study (e.g., Roach et al, 2009). However, ambivalence over emotional expression was also related to a more robust response to the intervention.…”

Section: Discussionmentioning

confidence: 99%

“…The diagnosis of Amyotrophic Lateral Sclerosis (ALS) evokes a number of issues related to psychological adaptation, such as adjustment to changes in functional abilities and physical appearance, guilt about being burdensome to caregivers, loss of autonomy, and coping with the certainty of death. However, there has been a paucity of research examining the psychological aspects of this disease, and, to date, few studies have incorporated a psychological intervention for people with ALS (Hunter, Robinson, & Neilson, 1993; Sebring & Moglia, 1987), despite the suggestion that the quality of life of people with ALS is more determined by psychological and existential factors than by physical health (e.g., Roach, Averill, Segerstrom, & Kasarskis, 2009; Robbins, Simmons, Bremer, Walsh, & Fischer, 2001; Simmons, Bremer, Robbins, Walsh, & Fischer, 2000). People with ALS differ from other patient groups for whom expressive disclosure has been used as an intervention (e.g., cancer, rheumatoid arthritis, asthma) in a number of important ways, including faster disease progression, paralysis, loss of independence, inability to communicate, and universal fatality as a prognosis.…”

mentioning

confidence: 99%

Expressive disclosure to improve well-being in patients with amyotrophic lateral sclerosis: A randomised, controlled trial

Averill

Kasarskis

Segerstrom

2013

Psychology & Health

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Amyotrophic lateral sclerosis (ALS) is a terminal neurological disease associated with progressive paralysis, loss of communicative ability, and functional decline. Expressive disclosure may help people with ALS, particularly those who are emotionally or socially inhibited, meet psychological challenges associated with the disease. People with ALS (N = 48) were randomised to expressive disclosure about their disease or no disclosure. Psychological well-being (affect, depression, quality of life) was assessed pre-intervention and 3 and 6 months after. Results of multi-level models indicated that the group that disclosed thoughts and feelings about ALS had higher well-being than the control group at 3 months post-intervention but not 6 months. Ambivalence over emotional expression (AEE) moderated 3-month post-intervention well-being. Those low in AEE had higher well-being than those high in AEE regardless of condition. Those high in AEE who disclosed had increased well-being from pre-intervention, whereas controls had decreased well-being from pre-intervention. Expressive disclosure may be helpful for people with ALS, but only those who have difficulty expressing emotions. In addition, the intervention had only temporary effects; the dynamic challenges of ALS progression may mean that the effect of processing thoughts and feelings about the disease in one stage may not generalize to later stages.

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“…As the disease progresses, strain on and psychological distress of informal caregivers of patients with ALS increase significantly,2–4 while caregivers’ quality of life worsens 5. Role strain due to many demands because of managing care, providing care, supporting the patient in decision-making, patient advocating and ordinary daily live responsibilities may have an impact on caregiver strain 6 7…”

Section: Introductionmentioning

confidence: 99%

Factors related to caregiver strain in ALS: a longitudinal study

Creemers

Moree²,

Veldink

et al. 2015

J Neurol Neurosurg Psychiatry

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The Dynamics of Quality of Life in ALS Patients and Caregivers

Abstract: Low QOL among ALS patients is likely due to pre-existing individual differences, whereas both individual differences such as demographics (e.g., age) and disease progression are likely to affect QOL among caregivers.

Cited by 60 publications

References 55 publications

Impact of Clinical and Quality of Life Outcomes of Long-Stay ICU Survivors Recovering From Rehabilitation on Caregivers' Burden

Impact of Clinical and Quality of Life Outcomes of Long-Stay ICU Survivors Recovering From Rehabilitation on Caregivers' Burden

Expressive disclosure to improve well-being in patients with amyotrophic lateral sclerosis: A randomised, controlled trial

Factors related to caregiver strain in ALS: a longitudinal study

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