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  • 1.
    Ciećwierska, Katarzyna
    et al.
    Department of Neurology, University Clinical Center of Medical University of Warsaw, Warsaw, Poland.
    Lulé, Dorothée
    Department of Neurology, University of Ulm, Ulm, Germany.
    Bielecki, Maksymilian
    Department of Psychology, SWPS University of Social Sciences and Humanities, Warsaw, Poland.
    Helczyk, Olga
    Department of Neurology, University of Ulm, Ulm, Germany.
    Maksymowicz-Śliwińska, Anna
    Department of Neurology, University Clinical Center of Medical University of Warsaw, Warsaw, Poland.
    Finsel, Julia
    Department of Neurology, University of Ulm, Ulm, Germany.
    Nieporęcki, Krzysztof
    Department of Neurology, University Clinical Center of Medical University of Warsaw, Warsaw, Poland.
    Andersen, Peter M.
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Neurovetenskaper.
    Ludolph, Albert C.
    Department of Neurology, University of Ulm, Ulm, Germany.
    Kuźma-Kozakiewicz, Magdalena
    Department of Neurology, University Clinical Center of Medical University of Warsaw, Warsaw, Poland; Department of Neurology, Medical University of Warsaw, Warsaw, Poland; Neurodegenerative Diseases Research Group, Medical University of Warsaw, Warsaw, Poland.
    Quality of life and depression in patients with amyotrophic lateral sclerosis – does the country of origin matter?2023Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 22, nr 1, artikkel-id 72Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Given the inevitable relentless progressing nature of amyotrophic lateral sclerosis (ALS), it is essential to identify factors influencing patients’ wellbeing. The study aimed to prospectively assess factors influencing the quality of life (QoL) and depression in ALS patients compared to healthy controls (HCs) from Poland, Germany and Sweden and their relationship to socio-demographic and clinical factors.

    Methods: 314 ALS patients (120 from Poland, 140 from Germany, 54 from Sweden) and 311 age-, sex- and education-level-matched HCs underwent standardized interviews for quality of life, depression, functional status and pain.

    Results: Patients from all three countries showed similar levels of functional impairment (ALSFRS-R). Overall, ALS patients assessed their quality of life as lower compared to HCs (p < 0.001 for the anamnestic comparative self-assessment (ACSA), p = 0.002 for the Schedule for the evaluation of the subjective quality of life - SEIQoL- direct weighting (SEIQoL-DW). Also, the German and Swedish patients, but not the Polish, reported higher depression levels than the corresponding HCs (p < 0.001). Analysis of ALS groups revealed that functional impairment was related to a lower quality of life (ACSA) and higher depression levels among German ALS patients. Longer time since diagnosis predicted lower depression and (in male subjects) higher quality of life.

    Conclusions: ALS patients assess their quality of life and mood lower than healthy individuals within the studied countries. The relationships between clinical and demographic factors are moderated by country of provenance, which bears implications for the design and interpretation of scientific and clinical studies, which should reflect the complexity and heterogeneity of mechanisms determining QoL.

    Fulltekst (pdf)
    fulltext
  • 2.
    Granat, Lisa
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Andersson, Sofia
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Hadziabdic, Emina
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Brännström, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Sandgren, Anna
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Translation, adaptation, and validation of the Self-efficacy in Palliative Care scale (SEPC) for use in Swedish healthcare settings2022Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, nr 1, artikkel-id 48Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: One challenge for healthcare professionals when delivering palliative care can be their lack of confidence. The Self-efficacy in Palliative Care Scale (SEPC) is considered a valid and reliable assessment scale to evaluate confidence when delivering palliative care. Currently, there is not a reliable instrument aimed to measure healthcare professionals’ confidence in palliative care in Swedish. Therefore, this study aimed to translate, culturally adapt, and validate the SEPC-scale for use in a Swedish healthcare context.

    Methods: This study applied the World Health Organization’s (WHO) guidelines for translating and adapting instruments, using forward and back-translation, an expert panel, and cognitive interviews. Swedish experts in palliative care (n = 6) assessed the Swedish version of the SEPC-scale based on its relevance, understandability, clarity, and sensitivity on a Likert scale. Methods involved calculation of content validity index (CVI) with modified kappa statistics and cognitive interviewing with healthcare professionals (n = 10) according to the “think-aloud” method.

    Results: Calculation of I-CVI (Item-CVI) showed that the Swedish SEPC-scale was considered relevant but needed some modifications to improve its understandability and clarity. The experts recognized an absence of precision in some items that affected clarity and understanding. Likewise, the healthcare professionals highlighted some challenges with understandability and clarity. They indicated that the scale was relevant, but a few items needed adjustment to fit a broader range of healthcare professionals. Items that referred to death and dying could be sensitive but were considered relevant.

    Conclusions: The SEPC-scale is considered valid for use in Swedish healthcare practice, for a broad range of healthcare professionals, and for diagnoses other than cancer. This study shows that cultural adaptation is necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.

    Fulltekst (pdf)
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  • 3. Holm, Maja
    et al.
    Doveson, Sandra
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management & Ethics, Karolinska Institutet, Sweden.
    Wennman-Larsen, Agneta
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Quality of life in men with metastatic prostate cancer in their final years before death: a retrospective analysis of prospective data2018Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 17, artikkel-id 126Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.

    Methods: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6–18 months and > 18 months before death.

    Results: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.

    Conclusion: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

    Fulltekst (pdf)
    fulltext
  • 4.
    Martinsson, Lisa
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Bergström, Jonas
    Palliative Care Unit, Stockholms Sjukhem Foundation, Stockholm, Sweden.
    Hedman, Christel
    R & D Department, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
    Strang, Peter
    R & D Department, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Oncology–Pathology, Karolinska Institutet, Stockholm, Sweden.
    Lundström, Staffan
    R & D Department, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Oncology–Pathology, Karolinska Institutet, Stockholm, Sweden.
    Symptoms, symptom relief and support in COVID-19 patients dying in hospitals during the first pandemic wave2021Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, nr 1, artikkel-id 102Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

    Fulltekst (pdf)
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  • 5.
    Martinsson, Lisa
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Lundström, Staffan
    Sundelöf, Johan
    Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals: a Swedish national register study2020Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 19, nr 1, artikkel-id 135Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Hospitalisation of patients with advanced dementia is generally regarded as less preferable compared to care at home or in a nursing home. For patients with other diagnoses, young age has been associated with better end-of-life care. However, studies comparing the quality of palliative care for persons with advanced dementia in hospitals and nursing homes are scarce. The aim of this study was to investigate whether quality of end-of-life care for patients with dementia depends on age, gender and place of death.

    Methods: The Swedish Register of Palliative Care (SRPC) was used to identify patients who died from dementia in hospitals or nursing homes during a three-year period. The likelihood of death occurring at a hospital, based on age and gender differences, was calculated. Associations between 13 end-of-life care quality indicators collected from the SRPC and age, gender and place of care were examined in a logistic regression model.

    Results: Death at a hospital was associated with poorer quality of end-of-life care for 10 of the 13 measured outcomes when compared to death at a nursing home, and with better quality according to two of the outcomes. Death at a hospital was more common for men compared to women and for younger patients compared to older. Receiving fluids intravenously or via enteral tube in the last 24 h of life was strongly associated with death at a hospital. Women were more likely to have their oral health assessed and less likely to have pressure ulcers at death. Eight of 12 end-of-life care outcomes showed better results for the age group 65 to 84 years compared to those 85 years or older.

    Conclusions: Death in hospitals was associated with poorer quality of end-of-life care compared to death in nursing homes. Our data support the importance of advance care planning and individual assessments in nursing homes to avoid referral to hospitals during end of life. Despite established recommendations to avoid hospitalisation if possible, there were strong associations between younger age, male gender and hospitalisation in the end of life. Further studies are needed to investigate the role of socioeconomic factors in end-of-life care for this patient group.

    Fulltekst (pdf)
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  • 6. Näppä, Ulla
    et al.
    Lundgren, Ann-Britt
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper.
    The effect of bereavement groups on grief, anxiety, and depression - a controlled, prospective intervention study2016Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 15, artikkel-id 58Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Bereavement groups are believed to be beneficial as preventive interventions to reduce the development of complicated grief for people at risk after the death of a significant other. This study aimed to investigate whether measurable effects on grief, anxiety, and depression could be detected in those participating in bereavement groups compared to non-participating controls.

    Methods: Questionnaires covering the Texas Revised Inventory of Grief (TRIG), the Hospital Anxiety and Depression Scale (HADS), and background questions were handed out pre-intervention, five weeks and one year post-intervention to bereaved caregivers invited to bereavement groups. The results were analysed with non-parametric methods.

    Results: A total of 124 individuals answered the questionnaires, and were divided into three categories: participants, non-participants unable to participate, and non-participants not wanting to participate in bereavement groups. At the one-year follow up, participants and those unable to participate reported higher levels of grief and were more anxious than those not wanting to participate. Depression did not differ between the groups.

    Conclusions: Participation in bereavement groups did not produce any effects on grief, anxiety, or depression in comparison to non-participants who were unable to participate. Non-participants who did not want to participate reported lower levels of grief and anxiety than the other two groups.

    Fulltekst (pdf)
    fulltext
  • 7.
    Rönningås, Ulrika
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Oncology, Sundsvall County Hospital, Sundsvall, Sweden.
    Holm, Maja
    Department of Nursing Sciences, Sophiahemmet University, Stockholm, Sweden; Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University College, Stockholm, Sweden.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Beckman, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper. Department of Oncology, Sundsvall County Hospital, Sundsvall, Sweden.
    Wennman-Larsen, Agneta
    Department of Nursing Sciences, Sophiahemmet University, Stockholm, Sweden; Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
    Symptoms and quality of life among men starting treatment for metastatic castration-resistant prostate cancer: a prospective multicenter study2024Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 23, nr 1, artikkel-id 80Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Men with metastatic castration-resistant prostate cancer (mCRPC) have an incurable disease. Along with prolonging life, symptom management is one of the main goals with treatment. This is also important from a palliative care perspective where the life prolonging outcomes should be balanced with quality of life (QoL) in this late phase. It is also essential in symptom management to view different dimensions of symptoms, for example how severe or distressing symptoms are, to support best QoL. Therefore, more knowledge is needed about the symptom experience when these treatments are initiated and thus the aim of this study was to describe different dimensions of symptoms in men with mCRPC starting their first-line of life-prolonging treatment, and to describe the association between symptom burden and QoL.

    METHODS: Baseline data from a prospective longitudinal study of 143 men with mCRPC starting their first-line life-prolonging treatment were used. Symptoms were measured using the Memorial Symptom Assessment Scale (MSAS) and global QoL was measured by the EORTC QLQ C-30. Data was analyzed using descriptive- and multivariable linear regression analyses.

    RESULTS: On average, the men had more than 10 symptoms (range 0-31 of 33). 50% or more reported sweats, lack of energy, pain, problems with sexual activity and sexual desire. The symptoms they reported as most severe, or most distressing were not always the ones that were reported as most frequent. There was an association between QoL and physical symptoms, and also between QoL, and analgesic use and prostate-specific antigen (PSA) values.

    CONCLUSION: Even if some men with mCRPC report many symptoms, the dimensions of severity and distress levels vary, and the most frequent symptoms was not always the most burdensome or distressing. There was an association between high physical symptom burden and QoL, suggesting that it is not the number of symptoms that affects QoL but rather the subjective perceived impact of the physical symptoms experienced. The knowledge of how men with mCRPC experience and perceive their symptoms may help health care professionals in symptom management aiming to improve QoL, which is a cornerstone in integrating early palliative care.

    Fulltekst (pdf)
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  • 8. Weber, Christian
    et al.
    Fijalkowska, Barbara
    Ciecwierska, Katarzyna
    Lindblad, Anna
    Badura-Lotter, Gisela
    Andersen, Peter M.
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Klinisk neurovetenskap.
    Kuzma-Kozakiewicz, Magdalena
    Ludolph, Albert C.
    Lule, Dorothee
    Pasierski, Tomasz
    Lynoee, Niels
    Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?2017Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 16, artikkel-id 80Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Healthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient’s choices will be addressed in the current debate.

    Main text: In this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying.

    Conclusion: According to the presented data, regulations of terminating life-sustaining treatments and the framework of “informed consent” are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

    Fulltekst (pdf)
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  • 9. Öhlén, Joakim
    et al.
    Böling, Susanna
    HamdanAlshehri, Hanan
    Brännström, Margareta
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Henoch, Ingela
    Hessman, Eva
    Nilsson, Stefan
    Ozanne, Anneli
    Strategies for knowledge translation of a palliative approach outside specialized palliative care services: a scoping review2022Inngår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, nr 1, artikkel-id 39Artikkel, forskningsoversikt (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area.

    METHODS: A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles).

    RESULTS: Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs.

    CONCLUSION: Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited.

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