Together we´ll Go All the Way: Fast-track Early Integration of Patients with Amyotrophic Lateral Sclerosis (ALS)

2019 ◽  
Author(s):  
Birgit Jaspers
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Fast Track ◽  
Early Integration ◽  
Lateral Sclerosis ◽  
The Way

scholarly journals Grey Matter 150th anniversary of Charcot’s description of amyotrophic lateral sclerosis

Brain ◽  
2019 ◽  
Vol 142 (10) ◽  
pp. 3306-3313 ◽  
Author(s):  
Philippe Corcia ◽  
Vincent Meininger
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
19Th Century ◽  
Grey Matter ◽  
150Th Anniversary ◽  
Anatomical Basis ◽  
The 19Th Century ◽  
Lateral Sclerosis ◽  
The Way

Charcot was the most prominent French neurologist of the 19th century, and his name will forever be associated with ALS. Corcia and Meininger examine how Charcot’s quest to uncover the anatomical basis of hysteria led him ultimately to characterize ALS, and highlight the contributions made by others along the way.

scholarly journals Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

2022 ◽  
Vol 11 (1) ◽  
pp. 254
Author(s):  
Katharina Linse ◽  
Elisa Aust ◽  
René Günther ◽  
Andreas Hermann
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Medical Care ◽  
Caregiver Burden ◽  
Terminal Phase ◽  
Caregiver Support ◽  
Early Integration ◽  
Quality Of Dying ◽  
Experience Of Care ◽  
Lateral Sclerosis

Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.

scholarly journals Engaging Specialist Palliative Care in the Management of Amyotrophic Lateral Sclerosis: A Patient-, Family-, and Provider-Based Approach

2020 ◽  
pp. 082585971989582
Author(s):  
Karla T. Washington ◽  
Klaudia Kukulka ◽  
Raghav Govindarjan ◽  
David R. Mehr
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Early Integration ◽  
Key Stakeholders ◽  
Lateral Sclerosis

Purpose: To describe key stakeholders’ perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders’ general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care’s definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

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

2020 ◽  
Vol 63 (1) ◽  
pp. 59-73 ◽  
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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