| 1. |
- Foucher, Juliette, et al.
(författare)
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Validity and reliability measures of the Swedish Karolinska version of the Edinburgh Cognitive and Behavioral ALS Screen (SK-ECAS)
- 2023
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Ingår i: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. - : Taylor & Francis. - 2167-8421 .- 2167-9223. ; 24:7-8, s. 713-718
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Cognitive and behavioral impairment is observed in up to 50% of patients with amyotrophic lateral sclerosis (ALS). The Edinburgh Cognitive and Behavioral ALS Screen (ECAS) is a 5-domain screening tool customized for quick cognitive screening in patients with ALS. Although the ECAS is available in Swedish at the Karolinska University Hospital (SK-ECAS), it has not yet been validated in Sweden stressing the need to assess validity and reliability of the SK-ECAS Version A.Methods: The study included 176 patients with ALS or other motor neuron disease diagnosed between September 2017 and October 2021 at the Karolinska ALS Clinical Research Center in Stockholm, Sweden, and 35 age-matched healthy control subjects. SK-ECAS was validated against the Montreal Cognitive Assessment (MoCA) and optimal cutoffs, receiver operating characteristic (ROC) curve and area under the curve (AUC) were calculated.Results: We identified an optimal cutoff of 108 for the SK-ECAS total score and 82 for the SK-ECAS ALS-specific score to detect cognitive impairment. The SK-ECAS showed good performance in indicating abnormal cognition with an AUC of 0.73 for SK-ECAS ALS-specific score and 0.77 for SK-ECAS total score. There was good internal consistency with a Cronbach’s alpha of 0.79.Conclusions: This study demonstrates good validity and reliability indices for SK-ECAS Version A for the detection of cognitive impairment in newly diagnosed ALS patients.
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| 2. |
- Imrell, Sofia, 1985-, et al.
(författare)
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Increased incidence of motor neuron disease in Sweden : a population-based study during 2002-2021
- 2024
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Ingår i: Journal of Neurology. - : Springer. - 0340-5354 .- 1432-1459. ; 271:5, s. 2730-2735
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Motor neuron diseases (MND), with amyotrophic lateral sclerosis constituting most cases, are rare conditions of unknown etiology. There have been reports of an increase in incidence during the latter half of the twentieth century in various Western countries, including Sweden. This study provides updated data on the incidence of MND in Sweden during the last 20 years.METHODS: Data was obtained from the Swedish National Patient Register on individuals diagnosed with MND from 2002 to 2021 and analysed in relation to group level data for the entire Swedish population. Incidence rates were calculated and presented in relation to year, age, sex, and region.RESULTS: In the early 2000s, there was a crude incidence rate of 3.5-3.7 per 100,000 person-years, which then increased to 4.0-4.6 from 2008 onward. Age standardization to the starting year (2002) partially mitigated this increase. The incidence rate was greater among men compared to women and was highest within the age range of 70 to 84 years. There were indications of a higher incidence rate in the northernmost parts of the country, although the difference was not statistically significant.CONCLUSIONS: The incidence rate of MND in Sweden now seems to have surpassed 4 cases per 100,000 person-years. This is higher when compared to both other European countries and previous Swedish studies. It remains to be determined if this increase reflects an actual increasing incidence of MND in Sweden or is due to other factors such as better registry coverage.
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| 3. |
- Kläppe, Ulf, et al.
(författare)
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Neurodegenerative biomarkers outperform neuroinflammatory biomarkers in amyotrophic lateral sclerosis.
- 2023
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Ingår i: Amyotrophic lateral sclerosis & frontotemporal degeneration. - 2167-9223. ; 25:1-2, s. 150-61
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Tidskriftsartikel (refereegranskat)abstract
- To describe the diagnostic and prognostic performance, and longitudinal trajectories, of potential biomarkers of neuroaxonal degeneration and neuroinflammation in amyotrophic lateral sclerosis (ALS).This case-control study included 192 incident ALS patients, 42 ALS mimics, 114 neurological controls, and 117 healthy controls from Stockholm, Sweden. Forty-four ALS patients provided repeated measurements. We assessed biomarkers of (1)neuroaxonal degeneration: neurofilament light (NfL) and phosphorylated neurofilament heavy (pNfH) in cerebrospinal fluid (CSF) and NfL in serum, and (2)neuroinflammation: chitotriosidase-1 (CHIT1) and monocyte chemoattractant protein 1 (MCP-1) in CSF. To evaluate diagnostic performance, we calculated the area under the curve (AUC). To estimate prognostic performance, we applied quantile regression and Cox regression. We used linear regression models with robust standard errors to assess temporal changes over time.Neurofilaments performed better at differentiating ALS patients from mimics (AUC: pNfH 0.92, CSF NfL 0.86, serum NfL 0.91) than neuroinflammatory biomarkers (AUC: CHIT1 0.71, MCP-1 0.56). Combining biomarkers did not improve diagnostic performance. Similarly, neurofilaments performed better than neuroinflammatory biomarkers at predicting functional decline and survival. The stratified analysis revealed differences according to the site of onset: in bulbar patients, neurofilaments and CHIT1 performed worse at predicting survival and correlations were lower between biomarkers. Finally, in bulbar patients, neurofilaments and CHIT1 increased longitudinally but were stable in spinal patients.Biomarkers of neuroaxonal degeneration displayed better diagnostic and prognostic value compared with neuroinflammatory biomarkers. However, in contrast to spinal patients, in bulbar patients neurofilaments and CHIT1 performed worse at predicting survival and seemed to increase over time.
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| 4. |
- SENNFÄLT, STEFAN, et al.
(författare)
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Associations between the spread of COVID-19 and end-of-life circumstances in the non-infected population of Sweden
- 2023
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Ingår i: Scandinavian Journal of Public Health. - 1403-4948 .- 1651-1905.
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Tidskriftsartikel (refereegranskat)abstract
- Aims: Since its outbreak in 2020, the COVID-19 pandemic has directly caused the premature death of millions. However, indirect consequences, such as social restrictions, have affected a far greater number. We explored the association between the spread of COVID-19 and end-of-life circumstances in the infected and non-infected population in Sweden. Methods: In this descriptive, population-based, observational study, we primarily used data from the Swedish National Registry of Palliative Care, which covers about 60% of all deaths in Sweden. We explored the association between the spread of COVID-19 and place of death, people present at death and end-of-life symptoms using regression analyses. Results: The study included 190,291 individuals who died in any region of Sweden from 1 January 2019 to 30 June 2022, of which 10,646 were COVID-19 cases. Correlated to the temporal and geographical spread of COVID-19, there was a greater proportion of individuals dying without the presence of their next-of-kin, and consequently more people dying alone, both in those with and without COVID-19. There was a similar pattern of a greater proportion of deaths taking place in nursing homes and in the individual’s own home. However, we did not find substantial associations to reported symptoms, such as anxiety or confusion. Conclusions: This study shows the profound effects of the COVID-19 pandemic on end-of-life circumstances in both the infected and non-infected population in Sweden. As we prepare for future pandemics, there is a need to develop strategies to minimise the impact on non-infected individuals.
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| 5. |
- Sennfält, Stefan, et al.
(författare)
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Informal caregivers in stroke : Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study
- 2020
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Ingår i: International Journal of Stroke. - : SAGE Publications. - 1747-4930 .- 1747-4949. ; 15:2, s. 197-205
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Tidskriftsartikel (refereegranskat)abstract
- Background: Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke. Aim: The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor. Patients and methods: In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent. Results: A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group. Conclusion: The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.
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| 6. |
- Sennfält, Stefan, et al.
(författare)
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Ischemic stroke patients with prestroke dependency : Characteristics and long-term prognosis
- 2021
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 143:1, s. 78-88
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Tidskriftsartikel (refereegranskat)abstract
- Objective: This paper aims at examining the clinical characteristics of ischemic stroke patients with different levels of prestroke functional dependency, their long-term outcome, and determinants of five-year mortality. Materials and methods: We describe demographics, comorbidity, treatment, as well as long-term mortality, and functional status of 5899 prestroke-dependent ischemic stroke patients stratified by dependency level and compared to a concurrent cohort of 14 148 prestroke-independent patients. The study was based on 2016 survey data from Riksstroke, the Swedish national stroke register, and patients were followed up at three months, 12 months, and either at three or five years. We used Cox regression for mortality predictor analysis and multiple imputation was performed to minimize bias from loss to follow-up. Results: With increasing level of prestroke dependency, comorbidity burden was higher, drug prescription lower, and prognosis less favorable. At three years, the proportion that had died or deteriorated were 82.6%, 87.5%, and 86.3% in moderate, moderately severe, and severe dependency, respectively. In moderate dependency, prognosis was relatively favorable: Three-month mortality was half of that seen in severe dependency (25.3% versus 49.6%). Differences in overall outcome between groups of varying prestroke functional dependency level were statistically significant (P <.05) at all follow-up time points. Conclusions: There was great heterogeneity between groups of different level of prestroke dependency; those of moderate dependency had a relatively favorable prognosis. Patients of different prestroke level of dependency need to be addressed separately, and further research is needed characterizing this group and exploring management strategies.
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| 7. |
- Sennfält, Stefan, et al.
(författare)
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Long-term outcome after ischemic stroke in relation to comorbidity – An observational study from the Swedish Stroke Register (Riksstroke)
- 2020
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Ingår i: European Stroke Journal. - : SAGE Publications. - 2396-9873 .- 2396-9881. ; 5:1, s. 36-46
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Comorbidity in stroke is common, but comprehensive reports are sparse. We describe prevalence of comorbidity and the prognostic impact on mortality and functional outcome in a large national ischemic stroke cohort. Methods: We used outcome data from a long-term follow-up survey conducted in 2016 by the Swedish Stroke Register (Riksstroke). Those included in the study were 11 775 pre-stroke functionally independent patients with first-ever ischemic stroke followed up at three months and 12 months (all patients), and three years (2013 cohort) or five years (2011 cohort). Pre-stroke comorbidity data for 16 chronic conditions were obtained from the Swedish National Patient Register, the Swedish Prescribed Drugs Register and the Riksstroke register. Individuals were grouped according to number of conditions: none (0), low (1), moderate (2–3) or high (≥4). Co-occurrence was analysed using hierarchical clustering, and multivariable analyses were used to estimate the prognostic significance of individual conditions. Results: The proportion of patients without comorbidity was 24.8%; 31.8% had low comorbidity; 33.5% had moderate comorbidity and 9.9% had high comorbidity. At 12 months, the proportion of poor outcome (dead or dependent: mRS ≥3) was 24.8% (no comorbidity), 34.7% (low), 45.2% (moderate) and 59.4% (high). At five years, these proportions were 37.7%, 50.3%, 64.3%, and 81.7%, respectively. There was clustering of cardiovascular conditions and substantial negative effects of dementia, kidney, and heart failure. Conclusion: Comorbidity is common and has a strong impact on mortality and functional outcome. Our results highlight the need for health systems to shift focus to a comprehensive approach in stroke care that includes multimorbidity as a key component.
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| 8. |
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| 9. |
- Sennfält, Stefan, et al.
(författare)
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Patterns in hospital readmissions after ischaemic stroke – An observational study from the Swedish stroke register (Riksstroke)
- 2020
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Ingår i: European Stroke Journal. - : SAGE Publications. - 2396-9873 .- 2396-9881. ; 5:3, s. 286-296
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: While acute treatment and secondary prevention in stroke have undergone major improvements, hospital readmission after index stroke remains high. However, there are few reports on long-term readmission patterns. Patients and methods: For this prospective observational study, data on demographics, functional status and living conditions were obtained from the Swedish Stroke Register (Riksstroke). Data on comorbidity and hospital readmissions up to five years post-index stroke were obtained from the Swedish National Patient Register. Patients were grouped based on number of readmissions: low (0–1) intermediate (2–4), high (5–9) or very high (≥10). Results: Of the 10,092 patients included, 43.7% had been readmitted within 12 months and 74.0% within 5 years. There was an average of three readmissions per individual during the five-year interval. A small group of patients with a high-comorbidity burden accounted for the majority of readmissions: approximately 20% of patients accounted for 60% of readmissions, and 5% of patients accounted for 25%. Circulatory conditions were the most common cause followed by infectious disease, stroke, trauma and diseases of the nervous system other than stroke. The proportion of readmissions due to stroke decreased sharply in the first six months. Conclusion: A small number of patients with a high degree of comorbidity accounted for the majority of hospital readmissions after index stroke. Our results highlight the need for further development of strategies to support high-risk comorbid stroke patients in the community setting. Further research describing characteristics and healthcare utilisation patterns in this group is warranted.
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| 10. |
- Sennfält, Stefan
(författare)
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Stroke in the Long Term. Prognosis, comorbidity, disability, readmission, and the caregiver perspective
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Stroke is a major cause of mortality and disability. Prognosis is constantly evolving and is affected by multiple factors, many of which have not previously been thoroughly analyzed. This thesis aims to provide an updated and comprehensive description of long-term prognosis after stroke, specifically exploring key factors such as comorbidity (Study II), pre-stroke functional dependency (Study III), readmission patterns (Study IV), and strain and well-being in informal caregivers (Study V). Method: The thesis describes patients registered in the Swedish Stroke Register (Riksstroke) in 2011 and 2013. Beyond Riksstroke’s regular follow-up surveys at three and 12 months, additional long-term surveys were conducted at three years (2013 cohort) and at five years (2011 cohort), which also enquired about the situation of informal caregivers. Data on comorbidity were obtained from the Swedish National Patient Register and the Swedish Prescribed Drug Register. The Charlson Comorbidity Index was used to guide selection of which chronic conditions to include. The Swedish National Patient Register also provided data on hospital readmissions. The modified Drug Rankin Scale was used to classify dependency level, and dependency was defined as a score of >3. Bivariate, multivariable, and hierarchical cluster analyses were performed and multiple imputation was used to minimize bias from loss to follow-up. Results: The common thesis cohort comprised 22 905 patients, and different subgroups were included in the individual studies. Total loss to follow-up was 12.7% at three months, 21.2% at 12 months, 20.3% at three years, and 16.9% at five years. Study I included the whole common cohort and provides a prognostic overview of both ischemic stroke (IS) and intracerebral haemorrhage (ICH). At five years after stroke, over two out of three patients with IS, and over three out of four patients with ICH, were either deceased or functionally dependent. The less favourable prognosis for ICH was largely explained by a higher early mortality. Study II included 11 775 pre-stroke independent IS patients. Comorbidity was common and had strong implications for long-term survival and functional outcome in all age groups. The largest effects were found for dementia, kidney and heart failure. Study III showed great heterogeneity among 5899 pre-stroke dependent IS patients. In those of severe pre-stroke dependency, comorbidity burden was higher, drug prescription was lower, and prognosis less favourable. Study IV included 10 092 pre-stroke dependent and independent IS patients. Readmission was common, particularly in the early phase after stroke, and a small group of patients with high comorbidity burden accounted for the majority of readmissions. The dominating cause was circulatory conditions. Study V explored the situation of 5063 informal caregivers to stroke patients. Life impact, need of support, and poor psychological well-being increased with degree of dependency of the stroke survivor. In caregivers to completely dependent survivors, 51.4% reported poor psychological well-being. Conclusions: The thesis describes substantial heterogeneity among stroke patients which is reflected in great variations in long-term prognosis, readmission patterns, and caregiver strain. This warrants a stratified and comprehensive approach to long-term support, healthcare, and research, which should also include informal caregivers.
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