Dying from ALS in Sweden: clinical status, setting, and symptoms

Sennfält, Stefan; Kläppe, Ulf; Thams, Sebastian; Samuelsson, Kristin; Fang, Fang; Ingre, Caroline

doi:10.1080/21678421.2022.2096411

Cited by 10 publications

(9 citation statements)

References 24 publications

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“…Our review included two qualitative studies with interviews [ 20 , 21 ], one RCT [ 22 ], three cohort studies (two retrospective [ 23 , 24 ], one prospective [ 25 ]), and two comparative retrospective chart/registry studies [ 26 , 27 ]. The majority of articles originated from Europe, with contributions from the United Kingdom [ 20 , 21 ], Italy [ 22 ], Finland [ 23 ], Sweden [ 24 , 26 ], and France [ 25 ]. One article was from the United States of America [ 27 ].…”

Section: Resultsmentioning

confidence: 99%

“…Sennfält et al, in a retrospective study, compared 93 ALS patients deceased in 2018–2020 with a cohort of 2224 ALS patients deceased in 2011–2020, focusing on symptom prevalence and NIV use in the last 12 months of life [ 24 ].…”

Section: Resultsmentioning

confidence: 99%

“…Sennfält et al [ 24 ] found that the utilization of regular NIV gradually increased over the last 12 months of life, reaching approximately 50% at the time of death for both ALS patients with spinal and bulbar onset. In the week preceding death, 57 out of 61 ALS patients with anticipated death (a culmination of a slow decline) and 21 out of 29 patients with precipitous death (rapid and unexpected clinical worsening) experienced dyspnea.…”

Section: Resultsmentioning

confidence: 99%

“…While dyspnea was effectively managed for most patients, around 29.8% in the “anticipated death” group found only partial or no relief. The lower prevalence of dyspnea in the precipitous death group did not reach statistical significance [ 24 ].…”

Section: Resultsmentioning

confidence: 99%

“…The use of NIV demonstrated effectiveness in managing daily breathing problems when incorporated into the daily routines of ALS patients [ 20 ]. As the disease progresses, there is an observed increase in the prevalence of NIV use among ALS patients [ 24 ]. In the final stages of the disease, specifically during the last 24 h of life, one-third of ALS patients were reported to have utilized NIV [ 23 ].…”

Section: Resultsmentioning

confidence: 99%

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Optimizing breathlessness management in amyotrophic lateral sclerosis: insights from a comprehensive systematic review

Filipe,

Carreira,

Reis-Pina

2024

BMC Palliat Care

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Background Breathlessness is a prevalent symptom affecting the quality of life (QOL) of Amyotrophic Lateral Sclerosis (ALS) patients. This systematic review explored the interventions for controlling breathlessness in ALS patients, emphasizing palliative care (PALC), non-invasive ventilation (NIV), opioids, and non-pharmacological strategies. Methods A comprehensive search of PubMed, Cochrane Library, and Web of Science databases was conducted. Eligibility criteria encompassed adults with ALS or motor neuron disease experiencing breathlessness. Outcomes included QOL and symptom control. Study designs comprised qualitative studies, cohort studies, and randomized controlled trials. Results Eight studies were included, most exhibiting low bias risk, comprising one randomized controlled trial, three cohort studies, two comparative retrospective studies, and two qualitative studies (interviews). Most studies originated from Europe, with one from the United States of America. The participants totaled 3423, with ALS patients constituting 95.6%. PALC consultations significantly improved symptom assessment, advance care planning, and discussions about goals of care. NIV demonstrated efficacy in managing breathlessness, with considerations for device limitations. Opioids were effective, though predominantly studied in non-ALS patients. Non-pharmacological strategies varied in efficacy among patients. Conclusion The findings underscore the need for individualized approaches in managing breathlessness in ALS. PALC, NIV, opioids, and non-pharmacological strategies each play a role, with unique considerations. Further research, especially ALS-specific self-management studies, is warranted.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Optimizing breathlessness management in amyotrophic lateral sclerosis: insights from a comprehensive systematic review

Filipe,

Carreira,

Reis-Pina

2024

BMC Palliat Care

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Homecare amyotrophic lateral sclerosis (ALS): A multidisciplinary, home‐based model of care for patients with ALS and their caregivers

Bublitz,

Eham,

Ellrott

et al. 2024

Muscle and Nerve

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Introduction/AimsMultidisciplinary care for patients with amyotrophic lateral sclerosis (ALS) is recommended in international guidelines, but reaches its limits when immobility increases. This pilot project addresses this gap by delivering home‐based, specialized, multiprofessional support to ALS patients who are not able to attend outpatient care. The study assessed the feasibility of this model of care and the satisfaction of both patients and caregivers.MethodsThis was a longitudinal cohort study of patients with ALS and their caregivers in the surroundings of Munich, Germany. Patients were regularly visited at home by a multiprofessional team (neurologists/palliative care physicians, nurse, social worker, chaplain).ResultsA total of 94 patients with ALS were included in the homecare project and 88 patients and 74 caregivers were enrolled in the accompanying study. The mean care duration was 221 days, enabling 61% of the 49 deceased patients to die at home. Notably, 20% of patients chose a way to hasten death. Patient satisfaction (ICECAP Supportive Care Measure [SCM]: 23.7/28, CollaboRATE: 10.6/12) and caregiver perception of the end‐of‐life phase (Caregiver Evaluation of the Quality of End‐Of‐Life Care [CEQUEL]: 24.9/26) were high.DiscussionThis pilot project successfully implemented specialized, home‐based multidisciplinary care for ALS patients and caregivers, demonstrating both feasibility and high satisfaction. The program enabled a large proportion of patients to remain in their homes, reducing the need for hospital care. The multiprofessional approach, including neuropalliative, psychosocial and spiritual support provided comprehensive care that addressed needs of patients and caregivers. Further research is warranted to explore cost‐effectiveness.

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La sclérose latérale amyotrophique : une maladie neurodégénérative emblématique

Viader

2023

Bulletin de l'Académie Nationale de Médecine

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Dying from ALS in Sweden: clinical status, setting, and symptoms

Cited by 10 publications

References 24 publications

Optimizing breathlessness management in amyotrophic lateral sclerosis: insights from a comprehensive systematic review

Optimizing breathlessness management in amyotrophic lateral sclerosis: insights from a comprehensive systematic review

Homecare amyotrophic lateral sclerosis (ALS): A multidisciplinary, home‐based model of care for patients with ALS and their caregivers

La sclérose latérale amyotrophique : une maladie neurodégénérative emblématique

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