Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages

Londral, Ana; Pinto, Anabela; Pinto, Susana; Azevedo, Leonardo; Carvalho, Mamede de

doi:10.1002/mus.24659

Cited by 59 publications

(50 citation statements)

References 35 publications

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“…The use of ETCS and brain–computer interfaces might facilitate psychological adaption and is likely to become more prevalent in the future . Patients with communicative disabilities should be provided with ETCS in a timely manner, as use of this technology can significantly improve QoL and reduce caregiver burden, and has the potential to alter end‐of‐life decisions . In summary, our study clearly shows the necessity of a direct and independent evaluation of LIS patients’ attitudes toward life‐prolonging measures and the need for specialized psychosocial support for NOK.…”

Section: Discussionmentioning

confidence: 80%

Eye‐tracking–based assessment suggests preserved well‐being in locked‐in patients

Linse¹,

Rüger

Joos

et al. 2017

Annals of Neurology

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We assessed quality of life (QoL) and psychological well-being in patients with amyotrophic lateral sclerosis-induced locked-in state and their next of kin in a fully unbiased manner using eye-tracking computer systems. Eleven of 30 screened patients and 9 next of kin completed study procedures. Patients reported good QoL, which appeared to be at the cost of the QoL of their next of kin. Next of kin rated their own or patients' QoL similarly, but they identified different areas as important as compared with patients. Our results are of importance for the discussion of end-of-life decisions and the evaluation of patients' presumed wishes as well as for psychosocial interventions. Ann Neurol 2017;81:310-315.

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Section: Discussionmentioning

confidence: 80%

Eye‐tracking–based assessment suggests preserved well‐being in locked‐in patients

Linse¹,

Rüger

Joos

et al. 2017

Annals of Neurology

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“…In addition, a recent study found that early intervention with an assistive communication device seems to have a positive impact on QOL and gives patients the opportunity to improve skills for communication in later disease stages (Londral et al . ). However, these assistive communication devices are usually too expensive for ALS family, which may increase the burdens of ALS patients and their caregivers.…”

Section: Discussionmentioning

confidence: 97%

Patients’ self‐perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross‐sectional study

Geng

Miao

et al. 2017

Journal of Clinical Nursing

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Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients might benefit patients in China or other South-East Asian countries under the Confucian concept of ethics. There is an urgent demand to expand medical insurance coverage to cover amyotrophic lateral sclerosis in China and other developing countries. Long and adequate supports are needed for relieving caregiver's burden. To improve the quality of life of patients, relieving the patients' SBP and caregivers' burden is likely to be not only required, but also essential.

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“…Loss of communication affects ALS patients’ ability to socialize and imposes a significant burden to the individuals QOL(41,42). Early intervention by speech therapists and use of communication devices has been shown to have a positive impact on QOL in ALS patients(41,43) and provides the patients opportunity to improve the skills for later stages of the disease.…”

Section: Discussionmentioning

confidence: 99%

Patient-reported problematic symptoms in an ALS treatment trial

Raheja

Stephens

Lehman

et al. 2016

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Objectives This study was undertaken to determine which symptoms are perceived to be most problematic for patients with ALS and how their severity changes over time. Methods A retrospective study was performed of data from a randomized, double-blind, placebo-controlled trial of ceftriaxone in ALS. Participants completed the ALS Specific Quality of Life Instrument (ALSSQOL) at baseline and at intervals up to 96 weeks. Ten ALSSQOL items ask participants to rate how problematic symptoms are (the subjective feeling of burden of these symptoms), ranging from 0 (no problem) to 10 (tremendous problem). Six are non-bulbar (pain, fatigue, breathing, strength and ability to move, sleep, and bowel and bladder) and four are bulbar (eating, speaking, excessive saliva, and mucus). Results There were 82 subjects (56% men, mean age 53 ± 10.3 years) with ALSSQOL data for weeks 0 and 96. All 10 symptoms became more problematic over time. For non-bulbar symptoms, strength/ability to move and fatigue were the most problematic. Speaking was the most problematic bulbar symptom. Conclusions Although all the symptoms in the ALSSQOL were acknowledged as problematic, some had greater impact than others. All became more problematic over time. This should help prioritize research into symptom management, and assist individual clinicians in their approach to patient care.

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Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages

Abstract: Early intervention with an ACD seems to have a positive impact on QoL and gives patients the opportunity to improve skills for communication in later disease stages.

Cited by 59 publications

References 35 publications

Eye‐tracking–based assessment suggests preserved well‐being in locked‐in patients

Eye‐tracking–based assessment suggests preserved well‐being in locked‐in patients

Patients’ self‐perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross‐sectional study

Patient-reported problematic symptoms in an ALS treatment trial

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