An exploratory study of serum urate levels in patients with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves. Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among the difficulties described were the practical issues associated with the caregiver role and emotional factors such as witnessing a patient’s health decline, relationship change, and their own distress. The mixed-methods approach allows for a more nuanced understanding of the burden and difficulties experienced. It is important to generate an evidence base to support the psychosocial wellbeing and brain health of informal caregivers.

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Inspiratory- and finger-flexion-related cortical potentials in patients with amyotrophic lateral sclerosis – An exploratory study

Clinical Neurology and Neurosurgery ◽

10.1016/j.clineuro.2012.02.049 ◽

2012 ◽

Vol 114 (5) ◽

pp. 455-459 ◽

Cited By ~ 2

Author(s):

Nataša Bizovičar ◽

Ignac Zidar ◽

Blaž Koritnik ◽

Janez Zidar

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Exploratory Study ◽

Finger Flexion ◽

Lateral Sclerosis ◽

Cortical Potentials

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An exploratory study of the association between thyroid hormone and survival of amyotrophic lateral sclerosis

Neurological Sciences ◽

10.1007/s10072-014-1658-z ◽

2014 ◽

Vol 35 (7) ◽

pp. 1103-1108

Author(s):

Zhenzhen Zheng ◽

Xiaoyan Guo ◽

Rui Huang ◽

Xueping Chen ◽

Huifang Shang

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Thyroid Hormone ◽

Exploratory Study ◽

Lateral Sclerosis

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Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study

BMC Health Services Research ◽

10.1186/s12913-015-1229-x ◽

2015 ◽

Vol 15 (1) ◽

Cited By ~ 14

Author(s):

M. Galvin ◽

C. Madden ◽

S. Maguire ◽

M. Heverin ◽

A. Vajda ◽

...

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Exploratory Study ◽

Patient Journey ◽

Multidisciplinary Clinic ◽

Lateral Sclerosis

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Speech Intelligibility and Marital Communication in Amyotrophic Lateral Sclerosis

Communication Disorders Quarterly ◽

10.1177/1525740110367824 ◽

2010 ◽

Vol 33 (1) ◽

pp. 34-41 ◽

Cited By ~ 6

Author(s):

Karin Joubert ◽

Juan Bornman ◽

Erna Alant

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Exploratory Study ◽

Neuromuscular Disease ◽

Speech Intelligibility ◽

Marital Relationship ◽

Holistic Approach ◽

Communication Intervention ◽

Marital Communication ◽

Positive Relation ◽

Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS), a rapidly progressive neuromuscular disease, has a devastating impact not only on individuals diagnosed with ALS but also their spouses. Speech intelligibility, often compromised as a result of dysarthria, affects the couple’s ability to maintain effective, intimate communication. The purpose of this exploratory study was to determine the association between the deteriorating speech of persons with ALS (PALS) and couples’ perceptions of marital communication. There were two participant groups: (a) persons with ALS (PALS) and (b) their spouses. Data were collected over a 12-month period through the administration of objective and subjective measures. A review of the findings suggested a positive relation between declining speech intelligibility and a couple’s perception of marital communication. A holistic approach to communication intervention should be adopted for PALS, as communication as a means of facilitating and maintaining intimacy in the marital relationship is particularly pertinent to this population.

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Automated Acoustic Analysis of Oral Diadochokinesis to Assess Bulbar Motor Involvement in Amyotrophic Lateral Sclerosis

Journal of Speech Language and Hearing Research ◽

10.1044/2019_jslhr-19-00178 ◽

2020 ◽

Vol 63 (1) ◽

pp. 59-73 ◽

Cited By ~ 3

Author(s):

Panying Rong

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Acoustic Analysis ◽

Speaking Rate ◽

Disease Stage ◽

Healthy Controls ◽

Tongue Movement ◽

Major Barrier ◽

Syllable Repetition ◽

Oral Diadochokinesis ◽

Lateral Sclerosis

Purpose The purpose of this article was to validate a novel acoustic analysis of oral diadochokinesis (DDK) in assessing bulbar motor involvement in amyotrophic lateral sclerosis (ALS). Method An automated acoustic DDK analysis was developed, which filtered out the voice features and extracted the envelope of the acoustic waveform reflecting the temporal pattern of syllable repetitions during an oral DDK task (i.e., repetitions of /tɑ/ at the maximum rate on 1 breath). Cycle-to-cycle temporal variability (cTV) of envelope fluctuations and syllable repetition rate (sylRate) were derived from the envelope and validated against 2 kinematic measures, which are tongue movement jitter (movJitter) and alternating tongue movement rate (AMR) during the DDK task, in 16 individuals with bulbar ALS and 18 healthy controls. After the validation, cTV, sylRate, movJitter, and AMR, along with an established clinical speech measure, that is, speaking rate (SR), were compared in their ability to (a) differentiate individuals with ALS from healthy controls and (b) detect early-stage bulbar declines in ALS. Results cTV and sylRate were significantly correlated with movJitter and AMR, respectively, across individuals with ALS and healthy controls, confirming the validity of the acoustic DDK analysis in extracting the temporal DDK pattern. Among all the acoustic and kinematic DDK measures, cTV showed the highest diagnostic accuracy (i.e., 0.87) with 80% sensitivity and 94% specificity in differentiating individuals with ALS from healthy controls, which outperformed the SR measure. Moreover, cTV showed a large increase during the early disease stage, which preceded the decline of SR. Conclusions This study provided preliminary validation of a novel automated acoustic DDK analysis in extracting a useful measure, namely, cTV, for early detection of bulbar ALS. This analysis overcame a major barrier in the existing acoustic DDK analysis, which is continuous voicing between syllables that interferes with syllable structures. This approach has potential clinical applications as a novel bulbar assessment.

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