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1.
  • Abou-Zeid, Nancy, et al. (författare)
  • Towards a cancer mission in Horizon Europe: recommendations
  • 2020
  • Ingår i: Molecular Oncology. - : Wiley Open Access. - 1878-0261 .- 1574-7891. ; 14:8, s. 1589-1615
  • Tidskriftsartikel (refereegranskat)abstract
    • A comprehensive translational cancer research approach focused on personalized and precision medicine, and covering the entire cancer research–care–prevention continuum has the potential to achieve in 2030 a 10-year cancer-specific survival for 75% of patients diagnosed in European Union (EU) member states with a well-developed healthcare system. Concerted actions across this continuum that spans from basic and preclinical research through clinical and prevention research to outcomes research, along with the establishment of interconnected high-quality infrastructures for translational research, clinical and prevention trials and outcomes research, will ensure that science-driven and social innovations benefit patients and individuals at risk across the EU. European infrastructures involving comprehensive cancer centres (CCCs) and CCC-like entities will provide researchers with access to the required critical mass of patients, biological materials and technological resources and can bridge research with healthcare systems. Here, we prioritize research areas to ensure a balanced research portfolio and provide recommendations for achieving key targets. Meeting these targets will require harmonization of EU and national priorities and policies, improved research coordination at the national, regional and EU level and increasingly efficient and flexible funding mechanisms. Long-term support by the EU and commitment of Member States to specialized schemes are also needed for the establishment and sustainability of trans-border infrastructures and networks. In addition to effectively engaging policymakers, all relevant stakeholders within the entire continuum should consensually inform policy through evidence-based advice.
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2.
  • Fürst, Per, et al. (författare)
  • Advanced cancer and concomitant dementia : access to specialized palliative care, emergency room, hospital care, and place of death
  • 2022
  • Ingår i: Acta Oncologica. - 0284-186X. ; 61:7, s. 874-880
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Dementia and advanced cancer are complex, life-limiting conditions that benefit from specialized palliative care (SPC) interventions at the end of life. The objective was to study possible differences in care for patients with concomitant advanced cancer and dementia (CA-DEM) or cancer only (CA) regarding access to SPC, acute hospital care, and place of death. Materials and methods: A retrospective observational registry study on health care consumption data from the Stockholm Regional Council involving logistic regression analyses of age, sex, living arrangements, comorbidities, dementia diagnosis, and socio-economic status. Results: Of the 12,667 persons aged ≥65 years who died from advanced cancer between 2015 and 2019, 605 had concomitant dementia. Of these, 76% of patients with CA and 42% of patients with CA-DEM had access to SPC (p<.0001). There were more admissions to palliative care for persons not living in nursing homes (p<.0001), women (p<.0001), socioeconomically privileged patients (p<.05), those with fewer comorbidities (p<.0001), and younger patients (<85 years) (p<.0001). Access to SPC reduced ER visits, hospitalizations, and acute hospital deaths for CA, whereas access to SPC only reduced hospital deaths in the CA-DEM group. Conclusions: The probability of being admitted to SPC was lower in cancer patients with known dementia. Access to SPC reduced emergency room visits and acute admissions to hospitals for the whole group, and hospital deaths both for CA and CA-DEM.
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3.
  • Hedman, Christel, et al. (författare)
  • Symptom management and support in dying patients with cancer and coronavirus disease-19 : a register-based study
  • 2023
  • Ingår i: Journal of Palliative Care. - : Sage Publications. - 0825-8597 .- 2369-5293. ; 38:3, s. 261-267
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care.Methods: Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death.Results: Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p <.001), while pain was less common (65% and 78%, respectively; p <.001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p =.014 to p <.001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p <.001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p <.001).Conclusion: More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.
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4.
  • Henoch, Ingela, et al. (författare)
  • Early Predictors of Mortality in Patients with COPD, in Relation to Respiratory and Non-Respiratory Causes of Death - A National Register Study
  • 2020
  • Ingår i: International journal of chronic obstructive pulmonary disease. - 1178-2005. ; 15, s. 1495-1505
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Both single factors and composite measures have been suggested to predict mortality in patients with chronic obstructive pulmonary disease (COPD) and there is a need to analyze the relative importance of each variable. Objective: To explore the predictors of mortality for patients with COPD in relation to respiratory, cardiac, and malignant causes, as well as all causes of death. Methods: After merging the Swedish Respiratory Tract Register (SRTR) and the Swedish Cause of Death Register, patients with respiratory, cardiac, and other causes of death were identified. Demographic and clinical variables from the deceased patients' first registration with the SRTR were compared. Three univariable and multivariable Cox proportional hazards regression analyses were conducted for different causes of death, with time from first registration to either death or a fixed end date as dependent variable, and variables regarding demographics, respiration, and comorbidities as independent variables. Results: In the multivariable Cox models, mortality for patients with all causes of death was predicted by older age 1.79 (CI 1.41, 2.27), lower percentage of predicted forced expiratory volume in 1 second (FEV1 %) 0.99 (CI 0.98, 0.99), lower saturation 0.92 (CI 0.86, 0.97), worse dyspnea 1.48 (CI 1.26, 1.74) (p<0.002 to p<0.001), less exercise 0.91 (CI 0.85, 0.98), and heart disease 1.53 (CI 1.06, 2.19) (both p<0.05). Mortality for patients with respiratory causes was predicted by higher age 1.67 (CI 1.05, 2.65) (p<0.05), lower FEV1% 0.98 (CI 0.97, 0.99), worse dyspnea 2.05 (CI 1.45, 2.90), and a higher number of exacerbations 1.27 (CI 1.11, 1.45) (p<0.001 in all comparisons). For patients with cardiac causes of death, mortality was predicted by lower FEV1% 0.99 (CI 0.98, 0.99) (p=0.001) and lower saturation 0.82 (CI 0.76, 0.89) (p<0.001), older age 1.46 (CI 1.02, 2.09) (p<0.05), and presence of heart disease at first registration 2.06 (CI 1.13, 3.73) (p<0.05). Conclusion: Obstruction predicted mortality in all models and dyspnea in two models and needs to be addressed. Comorbidity with heart disease could further worsen the COPD patient's prognosis and should be treated by a multidisciplinary team of professional specialists.
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5.
  • Lindskog, Magnus, et al. (författare)
  • Acute healthcare utilization in end-of-life among Swedish brain tumor patients - a population based register study
  • 2022
  • Ingår i: BMC Palliative Care. - : Springer Nature. - 1472-684X. ; 21
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Patients with progressive primary brain tumors commonly develop a spectrum of physical as well as cognitive symptoms. This places a large burden on family members and the condition's complexity often requires frequent health care contacts. We investigated potential associations between sociodemographic or socioeconomic factors, comorbidity or receipt of specialized palliative care (SPC) and acute healthcare utilization in the end-of-life (EOL) phase.Methods: A population-based retrospective study of all adult patients dying with a primary malignant brain tumor as main diagnosis in 2015-2019 in the Stockholm area, the most densely populated region in Sweden (N = 780). Registry data was collected from the Stockholm Region ' s central data warehouse (VAL). Outcome variables included emergency room (ER) visits or hospitalizations in the last month of life, or death in acute hospitals. Possible explanatory variables included age, sex, living arrangements (residents in nursing homes versus all others), Charlson Comorbidity Index, socio-economic status (SES) measured by Mosaic groups, and receipt of SPC in the last three months of life. T-tests or Wilcoxon Rank Sum tests were used for comparisons of means of independent groups and Chi-square test for comparison of proportions. Associations were tested by univariable and multivariable logistic regressions calculating odds ratios (OR).Results: The proportion of patients receiving SPC increased gradually during the last year of life and was 77% in the last 3 months of life. Multivariable analyses showed SPC to be equal in relation to sex and SES, and inversely associated with age (p <= 0.01), comorbidity (p = 0.001), and nursing home residency (p < 0.0001). Unplanned ER visits (OR 0.41) and hospitalizations (OR 0.45) during the last month of life were significantly less common among patients receiving SPC, in multivariable analysis (p < 0.001). In accordance, hospital deaths were infrequent in patients receiving SPC (2%) as compared to one in every four patients without SPC (p < 0.0001). Patients with less comorbidity had lower acute healthcare utilization in the last month of life (OR 0.35 to 0.65), whereas age or SES was not significantly associated with acute care utilization. Female sex was associated with a lower likelihood of EOL hospitalization (OR 0.72). Nursing home residency was independently associated with a decreased likelihood of EOL acute healthcare utilization including fewer hospital deaths (OR 0.08-0.54).Conclusions: Receipt of SPC or nursing home residency was associated with lower acute health care utilization among brain tumor patients. Patients with more severe comorbidities were less likely to receive SPC and required excess acute healthcare in end-of-life and therefore constitute a particularly vulnerable group.
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6.
  • Martinsson, Lisa, et al. (författare)
  • Dying from COVID-19 in nursing homes-sex differences in symptom occurrence
  • 2021
  • Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 21:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Coronavirus disease 2019 (COVID-19), is a disease with diverse presentation. Several studies have shown different occurrence of symptoms for women and men, but no studies have been found examining sex differences in clinical presentation for nursing home residents dying from COVID-19.The objective of this study was to describe sex and age differences and the impact of a dementia diagnosis on symptom occurrence during the last week in life for persons dying from COVID-19 in nursing homes.Methods: This is a population-based retrospective study based on data from the Swedish Register of Palliative Care. A total of 1994 residents aged 65 or older who died from COVID-19 in nursing homes were identified. The impact of sex, age and a dementia diagnosis on six different symptoms was analysed using chi2-test and multivariate logistic regression.Results: Residents dying from COVID-19 were more often men (p <.002). Men more often had dyspnoea and death rattles (p <.001). Nausea was more common in women (p <.001). No sex differences in the occurrence of pain, anxiety or confusion were seen. Dyspnoea and nausea were less commonly reported in residents with dementia (p <.001).Conclusions: We found sex differences in symptom presentation for fatal COVID-19 in nursing home settings which remained after adjusting for age. Residents with a dementia diagnosis had fewer symptoms reported before death compared to those without dementia.Clinical presentation of fatal COVID-19 differs between women and men in nursing homes. Residents with fatal COVID-19 present with more unspecific and less prominent symptoms when also suffering from dementia.
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7.
  • Martinsson, Lisa, et al. (författare)
  • Parenteral Hydration in Dying Patients With Cancer : A National Registry Study
  • 2024
  • Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 67:5, s. 384-392
  • Tidskriftsartikel (refereegranskat)abstract
    • Context: Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence. Objectives: To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death. Methods: The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011–2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ2-test and logistic regression. Results: A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p < 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p < 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50–1.6). Conclusion: There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings.
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8.
  • Martinsson, Lisa, et al. (författare)
  • Symptoms, symptom relief and support in COVID-19 patients dying in hospitals during the first pandemic wave
  • 2021
  • Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 20:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: At the time of the first wave of the COVID-19 pandemic in Sweden, little was known about how effective our regular end-of-life care strategies would be for patients dying from COVID-19 in hospitals. The aim of the study was to describe and evaluate end-of-life care for patients dying from COVID-19 in hospitals in Sweden up until up until 12 November 2020.Methods: Data were collected from the Swedish Register of Palliative Care. Hospital deaths during 2020 for patients with COVID-19 were included and compared to a reference cohort of hospital patients who died during 2019. Logistic regression was used to compare the groups and to control for impact of sex, age and a diagnosis of dementia.Results: The COVID-19 group (1476 individuals) had a lower proportion of women and was older compared to the reference cohort (13,158 individuals), 81.8 versus 80.6 years (p <.001). Breathlessness was more commonly reported in the COVID-19 group compared to the reference cohort (72% vs 43%, p <.001). Furthermore, anxiety and delirium were more commonly and respiratory secretions, nausea and pain were less commonly reported during the last week in life in the COVID-19 group (p <.001 for all five symptoms). When present, complete relief of anxiety (p =.021), pain (p =.025) and respiratory secretions (p =.037) was more often achieved in the COVID-19 group. In the COVID-19 group, 57% had someone present at the time of death compared to 77% in the reference cohort (p <.001).Conclusions: The standard medical strategies for symptom relief and end-of-life care in hospitals seemed to be acceptable. Symptoms in COVID-19 deaths in hospitals were relieved as much as or even to a higher degree than in hospitals in 2019. Importantly, though, as a result of closing the hospitals to relatives and visitors, patients dying from COVID-19 more frequently died alone, and healthcare providers were not able to substitute for absent relatives.
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9.
  • Martinsson, Lisa, et al. (författare)
  • Were Clinical Routines for Good End-of-Life Care Maintained in Hospitals and Nursing Homes During the First Three Months of the Outbreak of COVID-19? : A National Register Study
  • 2021
  • Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 61:1, s. 11-19
  • Tidskriftsartikel (refereegranskat)abstract
    • Context: Although the coronavirus disease 2019 (COVID-19) pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care.Objectives: The objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths because of COVID-19 compared with a reference cohort from 2019 and whether they differed between nursing homes and hospitals.Methods: Data about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March-May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort and between the nursing home and hospital COVID-19 deaths.Results: About 1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared with the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had a specialized palliative care team consultation (P < 0.0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes: 18%; hospitals: 100%).Conclusion: This national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.
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10.
  • Sandgren, Anna, 1970-, et al. (författare)
  • Hospitalised patients with palliative care needs : Spain and Sweden compared
  • 2024
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 14:e1, s. E851-E859
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives This study aimed to describe and compare symptoms, care needs and types of diagnoses in hospitalised patients with palliative care needs in Spain and Sweden.Methods A cross-sectional, population-based study was carried out at two hospitals in both Spain and Sweden. Using a questionnaire, we performed 154 one-day inventories (n=4213) in Spain and 139 in Sweden (n=3356) to register symptoms, care needs and diagnoses. Descriptive analyses were used.Results The proportion of patients with care needs in the two countries differed (Spain 7.7% vs Sweden 12.4%, p<0.001); however, the percentage of patients with cancer and non-cancer patients was similar. The most prevalent symptoms in cancer and non-cancer patients in both countries were deterioration, pain, fatigue and infection. The most common cancer diagnosis in both countries was lung cancer, although it was more common in Spain (p<0.01), whereas prostate cancer was more common among Swedish men (p<0.001). Congestive heart failure (p<0.001) was a predominant non-cancer diagnosis in Sweden, whereas in Spain, the most frequent diagnosis was dementia (p<0.001). Chronic obstructive pulmonary disease was common in both countries, although its frequency was higher in Spain (p<0.05). In total, patients with cancer had higher frequencies of pain (p<0.001) and nausea (p<0.001), whereas non-cancer patients had higher frequencies of deterioration (p<0.001) and infections (p<0.01).Conclusions The similarities in symptoms among the patients indicate that the main focus in care should be on patient care needs rather than diagnoses. Integrating palliative care in hospitals and increasing healthcare professional competency can result in providing optimal palliative care.
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