Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life

Chiò, Adriano; Vignola, A.; Mastro, Enza; Giudici, A. Dei; Iazzolino, Barbara; Calvo, Andrea; Moglia, Cristina; Montuschi, Anna

doi:10.1111/j.1468-1331.2010.03016.x

Cited by 138 publications

(126 citation statements)

References 33 publications

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“…Not only has the ECAS shown high sensitivity and specificity to cognitive impairment against a full neuropsychological battery (17)(18)(19)(20)(21), it has high clinical utility in describing the nature of these impairments. Monitoring progression of cognitive and behavioural symptoms may have important implications for patient management, treatment, prognosis, end-oflife decision making, and caregiver burden (22)(23)(24)(25)(26)(27)(28). The purpose of this study was to develop alternate forms of the ECAS to facilitate repeated assessment and longitudinal monitoring of cognition and behaviour in patients with ALS.…”

Section: Discussionmentioning

confidence: 99%

“…Cognitive dysfunction may have important implications for patient management, treatment fidelity, power of attorney, and endof-life decision making (22)(23)(24). Behaviour change has been linked to increased carer burden (25,26) and shortened survival (27,28). As such, the accurate assessment of cognition and behaviour over time is of vital importance to meeting the needs of patients and their families.…”

Section: Introductionmentioning

confidence: 99%

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ECAS A-B-C: alternate forms of the Edinburgh Cognitive and Behavioural ALS Screen

Crockford

Kleynhans

Wilton

et al. 2017

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Background: The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) is a short assessment by which neuropsychological symptoms can be detected and quantified in people with ALS. To avoid potential practice effects with repeated administration, here we present alternative versions of the ECAS suitable for measuring change over time. Objective: To develop two alternate versions of the ECAS: ECAS-B and ECAS-C. Method: One hundred and forty-nine healthy adult participants were recruited. Thirty participants completed a pilot study in developing the alternate versions. Two groups of 40 participants were administered the ECAS-B or ECAS-C and compared to published data of the original ECAS (ECAS-A) to determine equivalence. An additional 39 participants were administered the ECAS consecutively, either repeating the original version (ECAS-A-A-A) serially or the different versions (ECAS-A-B-C) to determine potential practice effects. Recordings of assessments were scored by a second researcher to determine inter-rater reliability. Results: No significant differences were found between versions (A, B, C) of the composite performance measures of ALS Specific, ALS Non-Specific, and ECAS Total scores. Repeated serial administration of ECAS-A (A-A-A) produced some practice effects for composite scores, whereas no such effects were found when alternate versions were administered serially (A-B-C). Exceptionally high intra-class correlations were found for all three versions of the ECAS suggesting a high degree of rater agreement. Conclusion: The newly developed alternate forms of the ECAS are both highly equitable to the original ECAS-A and enable avoidance of practice effects, thus supporting their use in measuring cognition and behaviour over time.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

ECAS A-B-C: alternate forms of the Edinburgh Cognitive and Behavioural ALS Screen

Crockford

Kleynhans

Wilton

et al. 2017

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

View full text Add to dashboard Cite

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“…Future studies should examine patients with PMA at an early disease stage to assess whether nonmotor changes have an impact on treatment issues, patient-caregiver interaction, and survival duration, similar to ALS. 2,39,40 Also, studies on nonmotor changes in MND should include measures of UMN severity in addition to the ALSFRS-R (which is mostly a lower motor neuron measure) to further confirm the hypothesis that a proportion of patients with PMA may be viewed as having ALS minus detectable UMN signs.…”

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confidence: 99%

Prefrontal involvement related to cognitive impairment in progressive muscular atrophy

et al. 2014

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“…Other authors, like Chiò et al also observed the same. 19 Other risk factors associated with greater strain were the carers' age and gender, with women, which represent the majority of caregivers, at higher risk. It seems relevant to refer the fact that, giving the time they spend on taking care of ALS patients, these people tend to ignore their own health condition, which could become a serious problem since older people have a higher risk of disease than younger ones.…”

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confidence: 99%

“…On the other hand, the later were connected to patient's neurobehavioral symptoms. 19 One important factor associated with lower HRQoL was the use of ventilation on ALS patients. NIV and mechanical ventilation on tracheostomized patients decreased quality of life on family, since they become responsible for the maintenance of the equipment and stability of the patient that is in more advanced stages of the disease.…”

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confidence: 99%

Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?

Pinho

Gonçalves

2016

Acta Med Port

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Introduction: Amyotrophic lateral sclerosis is a rare neurodegenerative disease affecting motor neurons. Patients present with progressive physical impairment, respiratory failure being the main cause of death. A significant portion of patients presents neurobehavioral problems as well. As severe impairment occurs, patients become highly dependent and in general, their families assume the role of primary caregivers, exposing them to stress and other potential causes of disease like insomnia, physical strain from patients’ mobilization and changes on eating habits. The aim of this work is to understand if taking care of patients with amyotrophic lateral sclerosis increases disease and health problems on caregivers. Material and Methods: Comprehensive review of the literature published on the electronic databases PubMed and Scopus between 2010 and 2014. Results: Eighteen studies met the inclusion criteria. We found that amyotrophic lateral sclerosis caregivers have higher levels of burden, depression and anxiety with lower quality of life. This is associated to age and gender of caregivers, time spent caring, patients’ disability and neurobehavioral changes. Higher sense of support and spirituality on family seem to promote wellbeing. Discussion: On our work, we were able to understand that several factors have influenced caregivers’ quality of life and affect their health. Besides, we could understand that the outcomes studied are related between themselves and, as seen in some of the studies, related to patients’ quality of life itself. Consequently, it has become essential to adopt a holistic approach of these patients and their families, fighting the deteriorating risk factors and investing on health promoters. Conclusion: Despite the large body of research on family caregiving for amyotrophic lateral sclerosis patients, little has changed and the outcomes measured remain almost the same before and after 2010. The work indicates that caregivers have lower levels of health than the general population. Still additional research is required, in order to better understand and characterized the changes on caregivers’ health. It is nevertheless clear that health care professionals cannot ignore these health changes and need an approach focused not only on patients but also on caregivers.

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Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life

Abstract: Neurobehavioral symptoms were present in 50% of our ALS patients and were related to bulbar symptoms. They have a profound negative impact on caregivers' psychological status and were highly related with caregivers' burden.

Cited by 138 publications

References 33 publications

ECAS A-B-C: alternate forms of the Edinburgh Cognitive and Behavioural ALS Screen

ECAS A-B-C: alternate forms of the Edinburgh Cognitive and Behavioural ALS Screen

Prefrontal involvement related to cognitive impairment in progressive muscular atrophy

Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?

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