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Article ; Online: Physical activity in patients with amyotrophic lateral sclerosis: Prevalence, patients' perspectives and relation to the motor performance.

Sznajder, Jan / Barć, Krzysztof / Kuźma-Kozakiewicz, Magdalena

2022 Volume 50, Issue 4, Page(s) 433–443

Abstract: Background: There are no recommendations for physical activity in amyotrophic lateral sclerosis (ALS) patients.: Objective: (i) To describe the prevalence and pattern of physical activity (PA) in ALS patients; (ii) to explore patients' attitude ... ...

Abstract	Background: There are no recommendations for physical activity in amyotrophic lateral sclerosis (ALS) patients. Objective: (i) To describe the prevalence and pattern of physical activity (PA) in ALS patients; (ii) to explore patients' attitude towards PA; and (iii) to investigate the relationship between PA at home environment and the rate of functional decline. Methods: 96 ALS patients were followed for 6 months at 3-month intervals and assessed by site of disease onset, disease duration, diagnosis delay, functional status, muscle strength, fatigue and prevalence of PA. Results: Over 70% of patients performed regular exercise and reported a positive effect of PA on functional status and mood. Regularly exercising individuals showed a higher ALSFRS-R bulbar score (11.0 vs 9.0, p = 0.011) and a lower decline of respiratory sub-score of ALSFRS-R compared to non-regularly exercising patients (0 vs 1.0, p = 0.026). Bulbar onset was a negative prognostic factor for regular exercise (odds ratio [OR]: 5.2, p = 0.004). Conclusion: The majority of ALS patients perform regular PA and find it positively influence their motor performance and mood. Bulbar disease onset, but not functional status, is a negative prognostic factor for regular exercise in ALS patients. Regular mild PA may result in a slower deterioration of functional status, especially the respiratory function.
MeSH term(s)	Amyotrophic Lateral Sclerosis ; Disease Progression ; Exercise ; Humans ; Prevalence
Language	English
Publishing date	2022-02-18
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1087912-2
ISSN	1878-6448 ; 1053-8135
ISSN (online)	1878-6448
ISSN	1053-8135
DOI	10.3233/NRE-210312
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Article: Gastrostomy and mechanical ventilation in amyotrophic lateral sclerosis: how best to support the decision-making process?

Barć, Krzysztof / Kuźma-Kozakiewicz, Magdalena

Neurologia i neurochirurgia polska

2020 Volume 54, Issue 5, Page(s) 366–377

Abstract: The unfavourable outcome of amyotrophic lateral sclerosis (ALS) confronts patients with challenging decisions regarding life-sustaining measures. The decision-making process is usually triggered by medical consultations and patient-dependent factors. ... ...

Abstract	The unfavourable outcome of amyotrophic lateral sclerosis (ALS) confronts patients with challenging decisions regarding life-sustaining measures. The decision-making process is usually triggered by medical consultations and patient-dependent factors. This may largely depend on the physician's depth of knowledge and professional experience. This paper presents an overview of the life-sustaining methods used in ALS and their effects on disease progression, survival and quality of life of patients and their caregivers. It is intended to aid physicians in their discussions with patients. We interrogate all the positive and negative facets of life-sustaining measures that may allow for optimisation of the decision-making process and care provision.
MeSH term(s)	Amyotrophic Lateral Sclerosis/therapy ; Disease Progression ; Gastrostomy ; Humans ; Quality of Life ; Respiration, Artificial
Language	English
Publishing date	2020-10-15
Publishing country	Poland
Document type	Journal Article ; Review
ZDB-ID	415519-1
ISSN	1897-4260 ; 0028-3843
ISSN (online)	1897-4260
ISSN	0028-3843
DOI	10.5603/PJNNS.a2020.0081
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Article: Edaravone in the treatment of amyotrophic lateral sclerosis.

Kuźma-Kozakiewicz, Magdalena

Neurologia i neurochirurgia polska

2018 Volume 52, Issue 2, Page(s) 124–128

MeSH term(s)	Amyotrophic Lateral Sclerosis/drug therapy ; Double-Blind Method ; Edaravone/therapeutic use ; Humans
Chemical Substances	Edaravone (S798V6YJRP)
Language	English
Publishing date	2018-03-21
Publishing country	Poland
Document type	Editorial
ZDB-ID	415519-1
ISSN	1897-4260 ; 0028-3843
ISSN (online)	1897-4260
ISSN	0028-3843
DOI	10.1016/j.pjnns.2018.03.004
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Article ; Online: Biochemical parameters in determination of nutritional status in amyotrophic lateral sclerosis.

Chełstowska, Beata / Kuźma-Kozakiewicz, Magdalena

Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology

2020 Volume 41, Issue 5, Page(s) 1115–1124

Abstract: Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disorder without effective treatment. Progressive dysphagia, depression, and hypermetabolism may lead to malnutrition. The aim of the present study was to analyze the ... ...

Abstract	Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disorder without effective treatment. Progressive dysphagia, depression, and hypermetabolism may lead to malnutrition. The aim of the present study was to analyze the potential utility of readily available, relatively inexpensive, and rapid strategy for using laboratory parameters to assess nutritional status of ALS patients. Methods: This study included 203 patients with ALS. The analysis of inflammatory parameters: C Reactive Protein (CRP), erythrocyte sedimentation rate (ESR), white blood cell count (WBC), lymphocytes number (LN), and fibrinogen concentration (FC) was followed by nutritional markers: serum concentration of albumin (ALB), prealbumin (PALB), transferrin (TRNF), and creatinine (CREA), which were correlated with demographic and clinical parameters: body mass index (BMI), ALS phenotype, disease duration, diagnosis delay, and functional and respiratory assessment. Results: Nearly 20% of patients had biochemical features of inflammation. Among patients without inflammation (n = 163), a decreased serum TRNF concentration was found in 84% of cases, PALB in 39%, ALB in 25%, and CREA in 53%. The median of PALB was the highest in patients with PMA (23.5 mg/dL) and the lowest in PBP (16.6 mg/dL) (p < 0.05). The CREA concentration correlated with the BMI (r = 0.25; p < 0.01), while PALB and TRNF significantly varied depending on the severity of dysphagia. Patients with dysphagia qualified to enteral nutrition showed significantly decreased concentration of PALB, triglycerides, as well as reduced forced vital capacity, BMI, and functional status. Conclusions: CREA, PALB, ALB, and TNFR are easily accessible, accurate, and low-cost parameters useful in assessment of the nutritional status in ALS.
MeSH term(s)	Adult ; Aged ; Aged, 80 and over ; Amyotrophic Lateral Sclerosis/blood ; Amyotrophic Lateral Sclerosis/complications ; Amyotrophic Lateral Sclerosis/diagnosis ; Body Mass Index ; Deglutition Disorders/blood ; Deglutition Disorders/complications ; Female ; Humans ; Inflammation/blood ; Male ; Middle Aged ; Nutritional Status ; Young Adult
Language	English
Publishing date	2020-01-02
Publishing country	Italy
Document type	Journal Article
ZDB-ID	2016546-8
ISSN	1590-3478 ; 1590-1874
ISSN (online)	1590-3478
ISSN	1590-1874
DOI	10.1007/s10072-019-04201-x
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Article ; Online: One third of physicians discuss exit strategies with patients with amyotrophic lateral sclerosis: Results from nationwide surveys among German and Polish neurologists.

Barć, Krzysztof / Finsel, Julia / Helczyk, Olga / Baader, Susanne / Aho-Özhan, Helena / Ludolph, Albert C / Lulé, Dorothée / Kuźma-Kozakiewicz, Magdalena

Brain and behavior

2024 Volume 14, Issue 2, Page(s) e3243

Abstract: Objective: This paper examines neurologists' approaches to exit strategies (ESs), such as euthanasia and physician-assisted suicide, in patients with amyotrophic lateral sclerosis (PALS) in two European countries.: Methods: In a nationwide anonymous ... ...

Abstract	Objective: This paper examines neurologists' approaches to exit strategies (ESs), such as euthanasia and physician-assisted suicide, in patients with amyotrophic lateral sclerosis (PALS) in two European countries. Methods: In a nationwide anonymous survey, we collected responses from 237 Polish and 228 German neurologists, focusing on their practices and beliefs about ESs, as well as their viewpoints on life-sustaining measures (LSMs) (percutaneous endoscopic gastrostomy, non-invasive, and invasive ventilation). To analyze the data, we employed statistical methods, including Mann-Whitney U, Kruskal-Wallis, chi-square tests, Spearman's rank correlation, and multiple regression analysis. Results: One third of the neurologists initiated the discussion about ESs with PALS. Half were ready to have this conversation upon patient's request. Age, gender, religiousness, and nationality were closely associated with this approach. One in 9 neurologists received a request to terminate an LSM, whereas 1 in 10 to implement an ES. German neurologists and palliative care trainees acquired both demands more commonly. Neurologists quoted a low quality of life, decreased mood, and being a burden to the family/closest ones as primary reasons for a wish to hasten death among PALS. Although the majority expressed a willingness to terminate an LSM at a request of the patient, most opposed the legalization of euthanasia. Younger and less religious individuals were more likely to favor accepting euthanasia. Conclusion: Neurologists vary significantly in their approaches to terminal care. Complex relationships exist among personal indices, shared beliefs, and current practices.
Language	English
Publishing date	2024-01-06
Publishing country	United States
Document type	Journal Article
ZDB-ID	2623587-0
ISSN	2162-3279 ; 2162-3279
ISSN (online)	2162-3279
ISSN	2162-3279
DOI	10.1002/brb3.3243
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Article ; Online: Attitudes of caregivers towards prolonging and shortening life in advanced stages of amyotrophic lateral sclerosis.

Maksymowicz-Śliwińska, Anna / Lulé, Dorothée / Nieporęcki, Krzysztof / Ciećwierska, Katarzyna / Ludolph, Albert C / Kuźma-Kozakiewicz, Magdalena

Folia neuropathologica

2024 Volume 61, Issue 4, Page(s) 349–359

Abstract: Introduction: Inevitable disease progression in amyotrophic lateral sclerosis (ALS) forces patients and their caregivers (CGs) to reflect on end-of-life treatment. The CGs are often heavily burdened with their role of surrogate decision-makers. The aim ... ...

Abstract	Introduction: Inevitable disease progression in amyotrophic lateral sclerosis (ALS) forces patients and their caregivers (CGs) to reflect on end-of-life treatment. The CGs are often heavily burdened with their role of surrogate decision-makers. The aim of the study was to analyze attitudes of CGs and presumable attitudes of ALS patients from the CGs' perspective towards palliative care in advanced disease stages. Material and methods: One hundred and sixty four CGs from Germany and Poland were interviewed regarding their own preferences and patients' ideational attitudes towards life-prolonging (invasive and non-invasive ventilation, tube feeding) and life-shortening methods (termination of measures, active measures if permitted by law). The data were correlated with patient- and CG-related factors: demographic and clinical data, care commitment, depression and quality of life (QoL). Results: The CGs were mostly female spouses of ALS patients, with secondary/higher education. Nearly 70% (81% in Poland, 57% in Germany; p = 0.0001) reported positive attitudes towards life-prolonging methods, which positively correlated with religiousness and negatively with patients' age. Approximately 40% of CGs (25% and 51% respectively; p = 0.001) reported positive attitudes towards life-shortening methods. It positively correlated with time since diagnosis and negatively with the CG's QoL, religiosity and religious/spiritual faith as factors that significantly influenced end-of-life decisions. There was a strongly positive correlation between CGs' positive attitudes towards life-shortening methods and presumed positive patients' attitudes assessed by their CGs ( p < 0.000001). Conclusions: Although attitudes towards treatment differed between countries, the CGs of ALS patients were generally positive towards life-prolonging treatment. A greater acceptance of life-shortening methods in the case of longer disease duration and poorer QoL may indicate worse coping with disease progression and weaker adaptation mechanisms in CGs compared to those previously reported in ALS patients. A close resemblance of the CGs' answers to probable patients' attitudes reported by the CGs indicates that many GCs might actually express their own culturally shaped attitudes towards end-of-life methods. In light of earlier-reported discrepancies between presumed opinions of the CGs and of patients themselves, a greater focus should be placed on thorough discussions on future treatment options with ALS patients in the presence of their CGs, to stay in line with the patient's authentic will.
MeSH term(s)	Humans ; Female ; Male ; Amyotrophic Lateral Sclerosis/therapy ; Quality of Life ; Caregivers ; Death ; Disease Progression
Language	English
Publishing date	2024-01-04
Publishing country	Poland
Document type	Journal Article
ZDB-ID	1310363-5
ISSN	1509-572X ; 0028-3894 ; 1641-4640
ISSN (online)	1509-572X
ISSN	0028-3894 ; 1641-4640
DOI	10.5114/fn.2023.130444
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Article: Positron emission tomography neuroimaging in neurodegenerative diseases: Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis.

Barc, Krzysztof / Kuźma-Kozakiewicz, Magdalena

Neurologia i neurochirurgia polska

2019 Volume 53, Issue 2, Page(s) 99–112

Abstract: Neurodegenerative diseases are a growing problem of ageing societies. Their insidious onset, and the lack of reliable biomarkers, result in significant diagnosis delays. This article summarises the results of studies on the use of positron emission ... ...

Abstract	Neurodegenerative diseases are a growing problem of ageing societies. Their insidious onset, and the lack of reliable biomarkers, result in significant diagnosis delays. This article summarises the results of studies on the use of positron emission tomography (PET) in the diagnosis of Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis. It focuses on clinical-pathogenetic aspects of individual diseases, as well as disease-specific patterns relevant in differential diagnosis and in assessing the risk of disease development and prognosis.
MeSH term(s)	Alzheimer Disease ; Amyotrophic Lateral Sclerosis ; Humans ; Neuroimaging ; Parkinson Disease ; Positron-Emission Tomography
Language	English
Publishing date	2019-03-11
Publishing country	Poland
Document type	Journal Article
ZDB-ID	415519-1
ISSN	1897-4260 ; 0028-3843
ISSN (online)	1897-4260
ISSN	0028-3843
DOI	10.5603/PJNNS.a2019.0013
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Article ; Online: Dyslipidemia in patients with amyotrophic lateral sclerosis - a case control retrospective study.

Chełstowska, Beata / Barańczyk-Kuźma, Anna / Kuźma-Kozakiewicz, Magdalena

Amyotrophic lateral sclerosis & frontotemporal degeneration

2020 Volume 22, Issue 3-4, Page(s) 195–205

Abstract: Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disorder leading to quadriplegia and aphagia. While swallowing difficulties and increased energy demand lead to malnutrition, increased lipid concentration may correlate with survival and ... ...

Abstract	Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disorder leading to quadriplegia and aphagia. While swallowing difficulties and increased energy demand lead to malnutrition, increased lipid concentration may correlate with survival and respiratory functions.
MeSH term(s)	Amyotrophic Lateral Sclerosis/complications ; Amyotrophic Lateral Sclerosis/epidemiology ; Case-Control Studies ; Dyslipidemias/epidemiology ; Humans ; Lipids ; Retrospective Studies
Chemical Substances	Lipids
Language	English
Publishing date	2020-10-26
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2705049-X
ISSN	2167-9223 ; 2167-8421
ISSN (online)	2167-9223
ISSN	2167-8421
DOI	10.1080/21678421.2020.1832119
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Article ; Online: Author response: An observational study on quality of life and preferences to sustain life in locked-in state.

Lulé, Dorothée / Kuzma-Kozakiewicz, Magdalena

Neurology

2020 Volume 95, Issue 6, Page(s) 276

MeSH term(s)	Amyotrophic Lateral Sclerosis ; Humans ; Quality of Life ; Surveys and Questionnaires
Language	English
Publishing date	2020-08-10
Publishing country	United States
Document type	Journal Article ; Comment
ZDB-ID	207147-2
ISSN	1526-632X ; 0028-3878
ISSN (online)	1526-632X
ISSN	0028-3878
DOI	10.1212/WNL.0000000000010124
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Article ; Online: Religiosity in patients with amyotrophic lateral sclerosis, a cross-country comparison.

Ciećwierska, Katarzyna / Lulé, Dorothée / Helczyk, Olga / Nieporęcki, Krzysztof / Bielecki, Maksymilian / Baader, Susanne / Ludolph, Albert C / Kuźma-Kozakiewicz, Magdalena

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

2023 Volume 32, Issue 8, Page(s) 2235–2246

Abstract: Purpose: Amyotrophic lateral sclerosis (ALS) is a progressive motor impairment leading to early death. Religiousness is one of the factors potentially alleviating the psychological burden of patients. However, its role might vary according to cultural ... ...

Abstract	Purpose: Amyotrophic lateral sclerosis (ALS) is a progressive motor impairment leading to early death. Religiousness is one of the factors potentially alleviating the psychological burden of patients. However, its role might vary according to cultural context. Our study aimed to analyze religiosity, and its clinical, psychological and socio-demographic correlates in ALS patients and controls, comparing two European countries with different cultural backgrounds. Methods: 268 Polish and German ALS patients, including 18 with locked-in syndrome (LIS) and 198 healthy controls (HC) were interviewed about religiousness, quality of life (Qol), depression, functional status and pain. A follow-up was conducted on 71 patients. Results: Polish subjects had a significantly higher level of public, private and general religiosity than the German sample. Importantly, we found no difference in total and public religiousness between ALS patients and HC within either population. Only the private religiousness was significantly higher in German patients compared to controls. In the same sample, private religiousness correlated with functional impairment due to disease progression. In ALS groups and LIS patients, religiousness did not correlate with any disease-associated factors: disease duration, pain, Qol or depression. Follow-up comparisons in the ALS group revealed worsening functional status, increased depression and no significant change in religiosity. Conclusions: Religiosity was linked to the cultural background rather than ALS. Generally, it did not correlate with clinical, psychological and socio-demographic parameters and was stable throughout disease progression. The only exception was the relationship between the functional decline and private religiosity among German patients.
MeSH term(s)	Humans ; Quality of Life/psychology ; Amyotrophic Lateral Sclerosis/psychology ; Religion ; Pain ; Disease Progression
Language	English
Publishing date	2023-03-16
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1161148-0
ISSN	1573-2649 ; 0962-9343
ISSN (online)	1573-2649
ISSN	0962-9343
DOI	10.1007/s11136-023-03383-4
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