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  • 1. Crombez, P.
    et al.
    Sharp, L.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Karolinska University Hospital, Stockholm, Sweden.
    Protogiros, D.
    Theologia, T. A.
    van Klinken, M.
    Hanan, T.
    Cancer nursing education and recognition in Europe: A survey by the European Oncology Nursing Society2020Ingår i: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 31, s. S1127-S1127Artikel i tidskrift (Övrigt vetenskapligt)
  • 2.
    Drury, Amanda
    et al.
    School of Nursing, Psychotherapy and Community Health, Dublin City University, Glasnevin, Dublin 9, Ireland.
    Sulosaari, Virpi
    Turku University of Applied Sciences, Turku, Finland; University of Turku, Turku, Finland.
    Sharp, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center Stockholm- Gotland, Stockholm, Sweden.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Oncology and Pathology, Karolinska Institute, Stockholm, Sweden; ME Head & Neck, Lung & Skin Cancer, Karolinska Comprehensive Cancer Center, Stockholm, Sweden.
    de Munter, Johan
    Cancer Centre University Hospital Ghent, Ghent, Belgium.
    Oldenmenger, Wendy
    Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Netherlands.
    The future of cancer nursing in Europe: Addressing professional issues in education, research, policy and practice2023Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 63, artikel-id 102271Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Cancer nursing has evolved to meet the demands of rising cancer incidence, newer and more complex treatment options, and the emergence of specialist roles supporting patients from pre-diagnosis, through treatment, survivorship and end of life care. Nurses are involved in direct and in-direct care of people at risk of, and living with and after cancer in diverse contexts. As a result, nurses are positioned to have a significant influence on the processes and outcomes of cancer care, through education, research, policy, practice and leadership. However, nursing and cancer care face challenges, arising from workforce shortages, under-investment in services and under-representation in decision-making. This paper discusses the evolution of cancer nursing across education, policy, research, profession and practice, and sets an agenda for innovation and disruption across these domains to ensure sustainability of cancer care services and care for people living with and after cancer. We argue for the continued advancement of cancer nursing with critical focus on identifying and addressing inequities in role recognition and access to specialist cancer nursing education throughout Europe. Partnership, exchange of learning, and co-design will be central to progressing education, evidence and policy to support future growth in the cancer nursing workforce and embed cancer nurses in research and policy setting at local, national and international levels.

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  • 3.
    Sharp, Lena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Centre, Stockholm-Gotland, Stockholm, Sweden.
    Dodlek, Nikolina
    Department for Oncology, University Hospital Center Osijek, Osijek, Croatia; Department of Nursing, Cyprus University of Technology, Limassol, Cyprus; Nursing and Palliative Care, Faculty for Medicine and Dental Health, Osijek, Croatia.
    Willis, Diane
    School of Health & Social Care, Edinburgh Napier University, Edinburgh, United Kingdom.
    Leppänen, Arja
    Regional Cancer Centre, Stockholm-Gotland, Stockholm, Sweden.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. ME Head & Neck, Lung & Skin Cancer, Karolinska Comprehensive Cancer Center, Stockholm, Sweden; Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
    Cancer prevention literacy among different population subgroups: challenges and enabling factors for adopting and complying with cancer prevention recommendations2023Ingår i: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 20, nr 10, artikel-id 5888Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    It is estimated that 40% of the cancer cases in Europe could be prevented if people had better information and tools to make healthier choices and thereby reduce some of the most important cancer risk factors. The aim of this study is to gain knowledge and understanding about cancer prevention literacy among people with intellectual disabilities, immigrants, young people and young cancer survivors. In this qualitative study, we conducted six online focus-group interviews, including forty participants, to explore the cancer prevention literacy of four population subgroups and determine how cancer prevention recommendations according to the European Code Against Cancer (ECAC) were perceived. The analysis resulted in the following main categories: current health beliefs and their impacts on how the ECAC recommendations were perceived, communication strategies and sources benefiting or hindering cancer prevention information from reaching out, and how vulnerabilities in these subgroups impact cancer prevention literacy. To improve cancer prevention literacy in Europe, more attention is needed this topic to overcome barriers among different population subgroups. Recommendations include improved and adapted cancer prevention information, support to individuals, as well as societal support, such as easy-access screening and vaccination programmes and regulations related to tobacco, alcohol, and diet.

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  • 4.
    Sharp, Lena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm-Gotland, Sweden; European Oncology Nursing Society (EONS), Advocacy Working Group, Belgium.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Fowler, Matthew
    Department of Oncology, University Hospitals of Derby and Burton NHS Foundation Trust, United Kingdom; European Oncology Nursing Society (EONS), Advocacy Working Group, Belgium.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm-Gotland, Sweden; Theme Cancer, ME Head and Neck, Lung and Skin Cancer, Karolinska Comprehensive Cancer Center, Stockholm, Sweden; Karolinska Institute, Department of Oncology-Pathology, Stockholm, Sweden; European Oncology Nursing Society (EONS), Advocacy Working Group, Belgium.
    Aspects of occupational safety: a survey among European cancer nurses2024Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 70, artikel-id 102595Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Nurses are particularly at risk for occupational exposure to hazardous cancer drugs, risking both acute and chronic health effects. Knowledge on the implemented safety precautions into minimizing these risks is limited.

    Methods: The European Cancer Nursing Index (ECNI) was developed by the European Oncology Nursing Society (EONS) to illustrate the development and status of this profession. In this study, anonymous online survey data on occupational safety reported by European cancer nurses as part of the ECNI 2022, was analysed.

    Results: A total of 630 cancer nurses from 29 countries responded to the survey. A majority reported that written guidelines (n = 553, 88%) on safe handling and administration of hazardous drugs, personal protection equipment (PPE) and cytotoxic spillage kits (n = 514, 82%) were available at their workplaces. 130 (21%) nurses reported that wipe testing to assess any residual hazardous drugs on workplace surfaces were conducted systematically at their workplaces. 185 (29%) nurses reported that nurses sometimes or always continued with their regular tasks (including handling hazardous cancer drugs) during pregnancy and breast feeding. 185 (29%) also responded that nurses at their workplaces did not receive an introductory education program before handling hazardous drugs. In total, 346 (55%) of the nurses reported that their workplace had a freedom to speak-up guardian or whistle blower policy for members of staff.

    Conclusions: Even if most nurses report that there are safety routines in place at their workplaces, the results reveal several serious occupational risks for European nurses handling hazardous cancer drugs. Actions are needed to improve and optimize occupational safety for nursing staff.

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  • 5. Ullgren, H. C.
    et al.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Implementing digital individual care plans for patients with head and neck cancer: Challenges and opportunities2019Ingår i: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 30Artikel i tidskrift (Övrigt vetenskapligt)
  • 6.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm-Gotland, Stockholm, Sweden.
    Factors related to hospital length of stay, re-admissions and unplanned care for patients with cancer, an on-going study2019Ingår i: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 30Artikel i tidskrift (Övrigt vetenskapligt)
  • 7.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Who cares? Fragmentation or integration of cancer care2021Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Background: New cancer treatments and increased accessibility of palliativecare have resulted in improved treatment outcomes. Coordination andcommunication between different health care professionals and providers mayimpact patient satisfaction and quality of care. The phases of curativetreatments, palliative and end-of-life care, are now less distinct and oftenoverlap, which may challenge clinical decision-making and the assessment ofthe patient’s prognosis. It is recommended that palliative care is integratedalongside acute cancer care and introduced earlier in the disease trajectoryconcurrent with ongoing cancer treatment and follow-up. Health care utilizationcan be defined as the description and quantification of how a patient uses healthcare services to improve a health problem and/or increase wellbeing. One of theways of measuring the quality of care and the performance of a health caresystem is to analyze different aspects of health care utilization. Intensity oftreatment and care at the end of life is a measure of quality and may identifyareas of end-of-life care organization that are in need of improvement. Recentresearch indicates that certain socioeconomic factors might impact health careutilization and intensity of treatment and care at the end of life.

    Aim: To explore different aspects of health care utilization for patients withcomplex cancer care trajectories in a changing cancer care.

    Methods: In this thesis a combination of quantitative data, both populationbasedregistry, survey (studies I-III) and qualitative data from focus groupinterviews (study (IV), were used. The participants are patients with complexcancer care trajectories (studies I-III), nurses and physicians from acute cancercare and specialized palliative care at home (study IV) in the region ofStockholm, Sweden. The purpose was to explore health care utilization fromdiagnosis to the end of life.

    Results: The results of studies I –III show several factors associated withhigher levels of health care utilization; living alone, younger age, more advanceddisease stage and multimodality treatment. In addition, the group with bothacute cancer and SPC at home are a vulnerable group with higher levels ofsymptoms and unplanned/acute care, risking unnecessary care transitions.Study I (203 patients with head and neck cancer) revealed lower satisfactionwith the amount of information received regarding diagnosis and treatment inthe group having a palliative care referral. Study II (1718 patients with head andneck, gynecological, upper gastrointestinal or hematological cancer) found thatnearly a quarter of those with both acute cancer and SPC at home care hadmultiple (three or more) unplanned hospital admissions. Study III (1726patients with lung or pancreatic cancer) found increased levels of intensity ofivcare when comparing the years 2010 and 2017, and a shift of care from inpatientto outpatient care. The results of study IV (23 participants in six focus groups)indicates uncertainty among health care professionals in both acute andpalliative cancer care regarding their organization, mandate, andresponsibilities as well as the prognosis of the patients. Participants from bothsettings (acute and palliative cancer care) discussed their responsibilities and itappeared to be clear for them who was responsible for symptom management(palliative care) and cancer treatments (acute cancer care). However,uncertainties about the overarching, holistic responsibility.

    Conclusions and clinical implications: In summary, our findings describecancer care in one large region of Sweden and issues related to fragmentationand health care utilization. These issues have consequences that may impactpatients, informal caregivers, the health care system, and health careprofessionals in terms of quality and safety. There are several suggestions forimprovements, such as a focus on integration of care on all levels (policy andorganization) and building a system steered primarily by the quality of care in aperson-centered integrated system.

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  • 8.
    Ullgren, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm-Gotland, Sweden; Theme Cancer, Karolinska University Hospital, Stockholm, Sweden.
    Camuto, Angela
    Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden.
    Rosas, Sumy
    Theme Cancer, Karolinska University Hospital, Stockholm, Sweden.
    Pahnke, Simon
    Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden.
    Ginman, Beatrice
    Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden.
    Enblad, Gunilla
    Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden.
    Glimelius, Ingrid
    Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Friesland, Signe
    Theme Cancer, Karolinska University Hospital, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Liu, Lisa
    Theme Cancer, Karolinska University Hospital, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Clinical characteristics and factors associated with COVID-19-related death and morbidity among hospitalized patients with cancer: a Swedish cohort study2021Ingår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 60, nr 11, s. 1459-1465Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Introduction: Cancer patients are considered to have a higher risk of dying and developing severe Coronavirus Disease 2019 (COVID-19). To date, there are few studies including co-morbidities and sociodemographic factors when investigating the outcome of COVID-19 in a cohort of cancer patients. In this study, we analyzed cancer patients that have been hospitalized due to COVID-19 during the first wave of the pandemic in Sweden to investigate the impact of COVID-19 on mortality and morbidity.

    Patients and methods: We retrospectively collected data on all patients with cancer that were hospitalized due to COVID-19-related symptoms at Uppsala University Hospital and Karolinska University Hospital between 1 March and 31 August 2020. The primary endpoint was COVID-19-related death and the secondary endpoint was to describe COVID-19 severity, defined as symptom severity (grades 0–4) and length of stay (LOS) at the university hospitals.

    Results: In total, 193 patients were included among which 31% died due to COVID-19 and 8% died of other causes. In a multivariable analysis, older age >70 (OR 3.6; 95% CI [1.8–7.3], p < 0.001) and male gender (OR 2.8 [1.4–5.8], p = 0.005) were factors associated with higher likelihood of COVID-19-related death. Several comorbidities ≥2 (OR 5.4 [2.0–14.3], p = 0.001) was independently associated with COVID-19 severity. Treatment with chemotherapy within 90 days prior to COVID-19 diagnosis were not associated with COVID-19-related death or severity.

    Conclusion: Factors associated with higher likelihood of COVID-19-related death were older age and male gender. More severe COVID-19 symptoms were seen in patients with multiple comorbidities. We did not see any associations between COVID-19-related death or severity and recent treatment including chemotherapy. In summary, this supports a thorough assessment regarding potential risks with COVID-19 infection in patients with cancer, with a combination of individual risk factors in addition to cancer treatments.

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  • 9.
    Ullgren, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Gotland, Stockholm, Sweden; Theme Cancer, Karolinska University Hospital, Stockholm, Sweden.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Olofsson, Anna
    Regional Cancer Center, Gotland, Stockholm, Sweden.
    Segersvärd, Ralf
    Regional Cancer Center, Gotland, Stockholm, Sweden; Department of Surgery, CLINTEC, Karolinska Institutet, Stockholm, Sweden.
    Sharp, Lena
    Regional Cancer Center, Gotland, Stockholm, Sweden; Department of Innovative Care, LIME, Karolinska Institutet, Stockholm, Sweden.
    Health care utilization at end of life among patients with lung or pancreatic cancer. Comparison between two Swedish cohorts2021Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 16, nr 7, artikel-id e0254673Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: The purpose was to analyze trends in intensity of care at End-of-life (EOL), in two cohorts of patients with lung or pancreatic cancer.

    Setting: We used population-based registry data on health care utilization to describe proportions and intensity of care at EOL comparing the two cohorts (deceased in the years of 2010 and 2017 respectively) in the region of Stockholm, Sweden.

    Primary and secondary outcomes: Main outcomes were intensity of care during the last 30 days of life; systemic anticancer treatment (SACT), emergency department (ED) visits, length of stay (LOS) > 14 days, intensive care (ICU), death at acute care hospital and lack of referral to specialized palliative care (SPC) at home. The secondary outcomes were outpatient visits, place of death and hospitalizations, as well as radiotherapy and major surgery.

    A multivariable logistic regression analysis was used for associations. A moderation variable was added to assess for the effect of SPC at home between the cohorts.

    Results: Intensity of care at EOL increased over time between the cohorts, especially use of SACT, increased with 10%, p<0.001, (n = 102/754 = 14% to n = 236/972 = 24%), ED visits with 7%, p<0.001, (n = 25/754 = 3% to n = 100/972 = 10%) and ICU care, 2%, p = 0.04, (n = 12/754 = 2% to n = 38/972 = 4%). High intensity of care at EOL were more likely among patients with lung cancer. The difference in use of SACT between the years, was moderated by SPC, with an increase of SACT, unstandardized coefficient β; 0.87, SE = 0.27, p = 0.001, as well as the difference between the years in death at acute care hospitals, that decreased (β = 0.69, SE = 0.26, p = 0.007).

    Conclusion: These findings underscore an increase of several aspects regarding intensity of care at EOL, and a need for further exploration of the optimal organization of EOL care. Our results indicate fragmentation of care and a need to better organize and coordinate care for vulnerable patients.

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  • 10.
    Ullgren, Helena
    et al.
    Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden; Karolinska University Hospital, Department of Oncology, Stockholm, Sweden.
    Kirkpatrick, Lily
    Kilpeläinen, Sini
    Sharp, Lena
    Working in silos? – Head & Neck cancer patients during and after treatment with or without early palliative care referral2017Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 26, s. 56-62Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The primary aim was to describe patients with Head and Neck (H&N) cancer referred to palliative care and how the care transition from acute oncological to palliative care impacted on both Health related quality of life (HRQoL) and information. The secondary aim was to explore H&N cancer patients' HRQoL and perceived information.

    Methods: H&N cancer patients were identified via the Swedish Cancer Register. Data were collected using the following questionnaires; European Organization for Research and Treatment of Cancer (EORTC) QLQ C-30, INFO25, and a study-specific questionnaire.

    Key results: Out of 289 patients, 203 (70%) responded and among these, 43 (21%) reported being referred to palliative care. Global health was the lowest reported functional scale (median score = 67) and fatigue (median scores 33) the highest reported symptom (QLQ C-30). Patients with a written care plan were significantly more satisfied with information regarding self-care compared to patients without a care plan. Patients referred to palliative care were less satisfied with information regarding disease (p < 0.000), the spread of the disease (p < 0.001) and were more likely to visit hospital emergency departments (43% vs. 19% p < 0.000).

    Conclusion: To avoid H&N cancer care in silos, a closer integration between the oncology and the palliative care team is needed. Further research on the complex situation of having oncological treatment concurrent with palliative care, is needed.

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  • 11. Ullgren, Helena
    et al.
    Sharp, Lena
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Bergkvist, K.
    Uncertainty when caring for patients with complex cancer care trajectories - perceptions of health care professionals from acute and palliative care regarding clinical decision-makingManuskript (preprint) (Övrigt vetenskapligt)
  • 12.
    Ullgren, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Oncology and Pathology, Karolinska Institute, Stockholm, Sweden; ME Head & Neck, Lung & Skin Cancer, Karolinska Comprehensive Cancer Center, Stockholm, Sweden.
    Sharp, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm, Sweden.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Bergkvist, Karin
    Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Stockholm, Sweden.
    Exploring health care professionals’ perceptions regarding shared clinical decision-making in both acute and palliative cancer care2022Ingår i: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, nr 23, artikel-id 16134Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Developments in cancer care have resulted in improved survival and quality of life. Integration of acute and palliative cancer care is desirable, but not always achieved. Fragmented care is associated with sub-optimal communication and collaboration, resulting in unnecessary care transitions. The aim of this study was to explore how health care professionals, from both acute and palliative care, perceive clinical decision-making when caring for patients undergoing active cancer treatment in parallel with specialized palliative care at home. Methods: Qualitative explorative design, using online focus-group interviews, based on patient-cases, among health care professionals (physicians and nurses) and Framework Analysis. Results: Six online focus-group interviews were performed. Few signs of systematic integration were found, risking fragmented care, and putting the patients in a vulnerable situation. Different aspects of uncertainty related to mandates and goals-of-care impacted clinical decision-making. Organizational factors appeared to hinder mutual clinical decision-making as well as the uncertainty related to responsibilities. These uncertainties seemed to be a barrier to timely end-of-life conversations and clinical decisions on optimal care, for example, the appropriateness of transfer to acute care. Conclusions: Lack of integration between acute and palliative care have negative consequences for patients (fragmented care), health care professionals (ethical stress), and the health care system (inadequate use of resources).

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  • 13.
    Ullgren, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm - Gotland, Sweden; Head & Neck, Lung -and Skin cancer, Theme Cancer, Karolinska University Hospital, Stockholm, Sweden.
    Sharp, Lena
    Olofsson, Anna
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Factors associated with healthcare utilisation during first year after cancer diagnose: a population-based study2021Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 30, nr 2, artikel-id e13361Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Improved cancer treatments and models of care (such as early palliative care) has developed during recent years. Aspects of healthcare utilisation—unplanned care have been used for evaluation of coordination and quality. The aim was to explore factors associated with cancer healthcare utilisation, during the first year after a cancer diagnosis.

    Methods: Population‐based registry and patient‐reported data, (The European Organisation of Research and Treatment of Cancer (EORTC), QLQ‐ C30 questionnaire and study‐specific questions) were collected. Descriptive statistics and multivariate regression models were performed.

    Results: The sample consists of 1718 patients (haematological, gynaecological, upper gastrointestinal and head and neck cancers). Living alone were associated with unplanned hospital admissions (OR 1.35; 95% CI [1.15, 1.59], p < 0.001). Patients with specialised palliative home care had a higher likelihood of unplanned hospital admissions, (OR 4.35; 95% CI [3.22‐5.91], p < 0.001) and re‐admissions within 30 days, (OR, 5.8; 95% CI [4.12‐8.19], p < 0.001).

    Conclusions: Sociodemographic and clinical factors, such as living alone and disease stage, is associated with healthcare utilisation. Patients with specialised palliative home care report lower levels of HRQoL and higher levels of unplanned care, and our findings stresses the importance of a holistic view when planning care.

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  • 14. Westman, B.
    et al.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Centre, Stockholm, Sweden; Karolinska University Hospital, Theme Cancer, Patient Area Airway, Lung and Skin Cancer, Stockholm, Sweden.
    Olofsson, A.
    Sharp, L.
    Patient-reported perceptions of care after the introduction of a new advanced cancer nursing role in Sweden2019Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 41, s. 41-48Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Extensive research results show quality improvements associated with advanced cancer nursing roles. Despite this, these roles are not implemented in many countries. The aim of this cross-sectional, population-based study was to compare patients' perception of care, before and after the introduction of a new advanced nursing role, the coordination contact nurse (CCN), in a region in Sweden.

    Method: All patients (with gynaecological, haematological, Head & Neck, upper gastrointestinal cancers) diagnosed in the region the year prior and one-year post introducing the new CCN role were identified from the Swedish Cancer Register. Data were collected using the European Organization of Research and Treatment of Cancer (EORTQ Quality of Life Questionnaire (QLQ-C30 and QLQ-INFO25) and a study specific questionnaire.

    Result: The results, based on baseline (n = 869) and follow-up data (n = 1003), show statistically significant patient-reported improvements after the introduction of the CCN role, regarding health-related patient information (EORTC QLQ- INFO25 global mean score increased from 41.23 to 44.16, p = 0.0006). We found statistically significant improvements related to availability of supportive care resources, e.g. increased reported access to contact nurse (from 53% to 66%, p <= 0.0001) and individual written care plans (from 40% to 54%, p < 0.0001). We also found some improvements related to patient involvement and care coordination, but also room for further developments.

    Conclusion: The implementation of the new advanced cancer nursing role may have contributed to important improvements, but it has also identified areas in need of development. Further research with long-term evaluations of CCN roles in other contexts, are both needed and on-going.

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