20 results on '"Sigurdardottir, Katrin Ruth"'
Search Results
2. Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study
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Yildiz, Berivan, primary, Allan, Simon, additional, Bakan, Misa, additional, Barnestein-Fonseca, Pilar, additional, Berger, Michael, additional, Boughey, Mark, additional, Christen, Andri, additional, De Simone, Gustavo G, additional, Egloff, Martina, additional, Ellershaw, John, additional, Elsten, Eline E C M, additional, Eychmüller, Steffen, additional, Fischer, Claudia, additional, Fürst, Carl Johan, additional, Geijteman, Eric C T, additional, Goldraij, Gabriel, additional, Goossensen, Anne, additional, Halfdanardottir, Svandis Iris, additional, Haugen, Dagny Faksvåg, additional, Hedman, Christel, additional, Hoppe, Tanja, additional, Hughes, Rosemary, additional, Iversen, Grethe Skorpen, additional, Joshi, Melanie, additional, Kodba-Ceh, Hana, additional, Korfage, Ida J, additional, Lunder, Urska, additional, Lüthi, Nora, additional, Martín-Roselló, Maria Luisa, additional, Mason, Stephen, additional, McGlinchey, Tamsin, additional, Montilla, Silvi, additional, Rasmussen, Birgit H, additional, Ruiz-Torreras, Inmaculada, additional, Schelin, Maria E C, additional, Sigurdardottir, Katrin Ruth, additional, Sigurdardottir, Valgerdur, additional, Simon, Judit, additional, Smeding, Ruthmarijke, additional, Solvåg, Kjersti, additional, Strupp, Julia, additional, Tripodoro, Vilma, additional, van der Kuy, Hugo M, additional, van der Rijt, Carin C D, additional, van Zuylen, Lia, additional, Veloso, Verónica I, additional, Vibora-Martin, Eva, additional, Voltz, Raymond, additional, Zambrano, Sofia C, additional, and van der Heide, Agnes, additional
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- 2022
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3. How Are Palliative Care Cancer Populations Characterized in Randomized Controlled Trials? A Literature Review
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Sigurdardottir, Katrin Ruth, Oldervoll, Line, Hjermstad, Marianne Jensen, Kaasa, Stein, Knudsen, Anne Kari, Løhre, Erik Torbjørn, Loge, Jon Håvard, and Haugen, Dagny Faksvåg
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- 2014
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4. Family members’ experiences of end-of-life care during the first phase of the COVID-19 pandemic
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Haugen, Dagny Faksvåg, primary, Romarheim, Elisabeth, additional, Solvåg, Kjersti, additional, and Sigurdardottir, Katrin Ruth, additional
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- 2022
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5. Pårørendes erfaringer med omsorg for døende under første fase av covid-19-pandemien
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Haugen, Dagny Faksvåg, primary, Romarheim, Elisabeth, additional, Solvåg, Kjersti, additional, and Sigurdardottir, Katrin Ruth, additional
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- 2022
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6. Family members' experiences of end-of-life care during the first phase of the COVID-19 pandemic.
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Faksvåg Haugen, Dagny, Romarheim, Elisabeth, Solvåg, Kjersti, and Sigurdardottir, Katrin Ruth
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GRIEF ,TERMINAL care ,EXTENDED families ,CRITICALLY ill ,PATIENTS ,QUANTITATIVE research ,FAMILY attitudes ,PSYCHOSOCIAL factors ,QUESTIONNAIRES ,DESCRIPTIVE statistics ,DEMENTIA ,COMMUNICATION ,THEMATIC analysis ,STAY-at-home orders ,DATA analysis software ,COVID-19 pandemic - Abstract
Background: The COVID-19-pandemic impacted on the care of seriously ill patients both with and without COVID-19. We anticipated that the pandemic and lockdown of Norway would also affect the holistic care of the dying and their family members. Objective: To gain insight into how family members experienced both end-of-life care for a close relative and support for themselves during the first phase of the COVID-19 pandemic in Norway. Method: Family members who had lost a close relative completed an open, online questionnaire that was available from July to October 2020. The form was answered anonymously by 102 bereaved persons. The questionnaire was based on CODE (Care of the Dying Evaluation), with additional questions linked to the pandemic and an option to add free-text comments. Quantitative data were analysed using descriptive statistics, and free-text comments were analysed thematically in five steps. Results: A total of 83 per cent of the family members were women, median age group 50-59 years, and 61 per cent had lost a parent. Of the deceased, 46 per cent were women, 75 per cent were > 0 years, 48 per cent had cancer and 24 per cent had dementia. A total of 83 per cent died between March and June. Sixteen per cent died at home while 33 per cent died in hospital and 40 per cent died in a nursing home. Most of the family members (85 per cent) were of the opinion that the patient had received satisfactory treatment and nursing care while 35 per cent felt that they themselves had not received adequate support during the patient's final days. Four themes stood out in the free-text comments: 'A safe and dignified end to the journey' describes the good care and individualised approach that many experienced despite the pandemic and lockdown. 'It was all about coronavirus measures' includes experiences of poor availability and quality of treatment and nursing care, inadequate follow-up of family members and a lack of information or confusing information. 'Loss of contact and closeness' deals with the experiences and consequences of visiting bans, visiting restrictions and infection control measures. 'We never heard anything afterwards' describes the lack of contact after the death. Conclusion: Family members largely considered the nursing care and symptom relief to be good. However, the lack of communication, strict visiting restrictions and alienating personal protective equipment led to feelings of uncertainty and a sense of loss and frustration during both the patient's final days and afterwards. [ABSTRACT FROM AUTHOR]
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- 2022
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7. A pan-European survey of research in end-of-life cancer care
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Sigurdardottir, Katrin Ruth, Haugen, Dagny Faksvåg, Bausewein, Claudia, Higginson, Irene J., Harding, Richard, Rosland, Jan Henrik, Kaasa, Stein, and on behalf of project PRISMA
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- 2012
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8. Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study
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Hjorth, Nina Elisabeth, Schaufel, Margrethe Aase, Sigurdardottir, Katrin Ruth, and Haugen, Dagny R Faksvåg
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Lung Diseases ,Male ,Advance care planning ,Palliative care ,medicine.medical_treatment ,lcsh:Medicine ,Pilot Projects ,0302 clinical medicine ,Adaptation, Psychological ,Pulmonary Medicine ,Medicine ,030212 general & internal medicine ,Qualitative Research ,media_common ,Aged, 80 and over ,palliative care ,Norway ,Communication ,Medical record ,Lung Cancer ,Focus Groups ,Middle Aged ,Hospitalization ,COPD exacerbations ,030220 oncology & carcinogenesis ,language ,Female ,Adult ,Pulmonary and Respiratory Medicine ,medicine.medical_specialty ,Health Personnel ,media_common.quotation_subject ,Norwegian ,Advance Care Planning ,03 medical and health sciences ,Humans ,Conversation ,Pulmonary rehabilitation ,non-small cell lung cancer ,Aged ,lcsh:RC705-779 ,business.industry ,lcsh:R ,perception of asthma/breathlessness ,lcsh:Diseases of the respiratory system ,interstitial fibrosis ,Focus group ,pulmonary rehabilitation ,language.human_language ,Attitude ,Family medicine ,Feasibility Studies ,small cell lung cancer ,business - Abstract
Background and aimsAdvance care planning (ACP) is communication about wishes and preferences for end-of-life care. ACP is not routinely used in any Norwegian hospitals. We performed a pilot study (2014–2017) introducing ACP on a thoracic medicine ward in Norway. The aims of this study were to explore which topics patients discussed during ACP conversations and to assess how patients, relatives and clinicians experienced the acceptability and feasibility of performing ACP.MethodsConversations were led by a study nurse or physician using a semistructured guide, encouraging patients to talk freely. Each conversation was summarised in a report in the patient’s medical record. At the end of the pilot period, clinicians discussed their experiences in focus group interviews. Reports and transcribed interviews were analysed using systematic text condensation.ResultsFifty-one patients participated in ACP conversations (41–86 years; 9 COPD, 41 lung cancer, 1 lung fibrosis; 11 women); 18 were accompanied by a relative. Four themes emerged: (1) disturbing symptoms, (2) existential topics, (3) care planning and (4) important relationships. All participants appreciated the conversations. Clinicians (1 physician and 7 nurses) participated in two focus group interviews. Reports from ACP conversations revealed patient values previously unknown to clinicians; important information was passed on to primary care. Fearing they would deprive patients of hope, clinicians acted as gatekeepers for recruitment. Although they reported barriers during recruitment, many clinicians saw ACP as pertinent and called for time and skills to integrate it into their daily clinical practice.ConclusionsPatients, relatives and clinicians showed a positive attitude towards ACP. Focusing on present and future symptom control may be an acceptable way to introduce ACP. Important aspects for implementing ACP in this patient group are management support, education, training, feasible routines and allocated time to perform the conversations.
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- 2020
9. Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study
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Hjorth, Nina Elisabeth, primary, Schaufel, Margrethe Aase, additional, Sigurdardottir, Katrin Ruth, additional, and Haugen, Dagny R Faksvåg, additional
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- 2020
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10. Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries.
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Haugen, Dagny Faksvåg, Hufthammer, Karl Ove, Gerlach, Christina, Sigurdardottir, Katrin, Hansen, Marit Irene Tuen, Ting, Grace, Tripodoro, Vilma Adriana, Goldraij, Gabriel, Yanneo, Eduardo Garcia, Leppert, Wojciech, Wolszczak, Katarzyna, Zambon, Lair, Passarini, Juliana Nalin, Saad, Ivete Alonso Bredda, Weber, Martin, Ellershaw, John, Mayland, Catriona Rachel, Faksvåg Haugen, Dagny, Sigurdardottir, Katrin Ruth, and Tuen Hansen, Marit Irene
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MEDICAL quality control ,HOSPITALS ,SOCIAL support ,EMPATHY ,CONFIDENCE intervals ,TERMINALLY ill ,INTERVIEWING ,MEDICAL care ,MEDICAL personnel ,FAMILY attitudes ,PATIENTS' families ,HEALTH ,INFORMATION resources ,POSTAL service ,QUESTIONNAIRES ,DESCRIPTIVE statistics ,COMMUNICATION ,INFORMATION needs ,DIGNITY ,RESPECT ,ODDS ratio ,CANCER patient medical care ,BEREAVEMENT - Abstract
Background: Recognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods: A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results: Of 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion: This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice: Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement. Disparities exist in the quality of end‐of‐life care. This article assesses the quality of care for dying cancer patients, as perceived by bereaved relatives, within hospitals in seven European and South American countries. [ABSTRACT FROM AUTHOR]
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- 2021
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11. Pilot testing of the first version of the European Association for Palliative Care basic dataset: A mixed methods study
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Sigurdardottir, Katrin Ruth, primary, Hjermstad, Marianne J, additional, Filbet, Marilene, additional, Tricou, Colombe, additional, McQuillan, Regina, additional, Costantini, Massimo, additional, Autelitano, Cristina, additional, Bennett, Michael I, additional, and Haugen, Dagny Faksvåg, additional
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- 2019
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12. Incidence of Psychogenic Seizures in Adults: A Population-Based Study in Iceland
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Sigurdardottir, Katrin Ruth and Olafsson, Elias
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- 1998
13. Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.
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Hansen, Marit Irene Tuen, Haugen, Dagny Faksvåg, Sigurdardottir, Katrin Ruth, Kvikstad, Anne, Mayland, Catriona R., Schaufel, Margrethe Aase, on behalf of the ERANet-LAC CODE project group, Hufthammer, Karl Ove, Leppert, Wojciech, Wolszczak, Katarzyna, Yanneo, Eduardo Garcia, Tripodoro, Vilma, Goldraij, Gabriel, Weber, Martin, Gerlach, Christina, Zambon, Lair, Passarini, Juliana Nalin, Saad, Ivete Bredda, Ellershaw, John, and Ting, Grace
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PSYCHOLOGICAL adaptation ,BEREAVEMENT ,CANCER patients ,PALLIATIVE treatment ,PATIENT safety ,QUALITY assurance ,QUESTIONNAIRES ,PSYCHOLOGY of Spouses ,SURVEYS ,UNCERTAINTY ,QUALITATIVE research ,EXTENDED families ,JOB performance ,PSYCHOSOCIAL factors ,SOCIAL support - Abstract
Background: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. Methods: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6–8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. Results: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation. Conclusions: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping. [ABSTRACT FROM AUTHOR]
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- 2020
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14. How is depression classified, assessed, and reported in clinical studies of palliative care cancer patients? A systematic literature review
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Janberidze, Elene, Haugen, Dagny Faksvåg, Sigurdardottir, Katrin Ruth, Løhre, Erik Torbjør, Lie, Hanne Kathrine, Loge, Jon Håvard, Kaasa, Stein, and Knudsen, Anne Kari
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- 2013
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15. How Are Patient Populations Characterized in Studies Investigating Depression in Advanced Cancer? Results From a Systematic Literature Review
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Janberidze, Elene, primary, Hjermstad, Marianne Jensen, additional, Haugen, Dagny Faksvåg, additional, Sigurdardottir, Katrin Ruth, additional, Løhre, Erik Torbjørn, additional, Lie, Hanne Cathrine, additional, Loge, Jon Håvard, additional, Kaasa, Stein, additional, Knudsen, Anne Kari, additional, Brearley, Sarah, additional, Caraceni, Augusto, additional, Cohen, Joachim, additional, De Groote, Zeger, additional, Deliens, Luc, additional, Francke, Anneke L., additional, Harding, Richard, additional, Higginson, Irene J., additional, Linden, Karen, additional, Miccinesi, Guido, additional, Onwuteaka-Philipsen, Bregje, additional, Pardon, Koen, additional, Pasman, Roeline, additional, Pautex, Sophie, additional, Payne, Sheila, additional, and Van den Block, Lieve, additional
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- 2014
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16. Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop
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Sigurdardottir, Katrin Ruth, primary, Haugen, Dagny Faksvåg, additional, Rijt, Carin C.D. van der, additional, Sjøgren, Per, additional, Harding, Richard, additional, Higginson, Irene J., additional, and Kaasa, Stein, additional
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- 2010
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17. Computer-Based Assessment of Symptoms and Mobility in Palliative Care: Feasibility and Challenges
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Fyllingen, Even Hovig, primary, Oldervoll, Line M., additional, Loge, Jon Håvard, additional, Hjermstad, Marianne Jensen, additional, Haugen, Dagny Faksvåg, additional, Sigurdardottir, Katrin Ruth, additional, Paulsen, Ørnulf, additional, and Kaasa, Stein, additional
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- 2009
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18. Prevalence of distressing symptoms in hospitalised patients on medical wards: A cross-sectional study
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Sigurdardottir, Katrin Ruth, primary and Haugen, Dagny Faksvåg, additional
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- 2008
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19. Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.
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Zambrano, Sofia C., Haugen, Dagny Faksvåg, van der Heide, Agnes, Tripodoro, Vilma A., Ellershaw, John, Fürst, Carl Johan, Voltz, Raymond, Mason, Stephen, Daud, María L., De Simone, Gustavo, Kremeike, Kerstin, Halfdanardottir, Svandis Iris, Sigurdardottir, Valgerdur, Johnson, Jeremy, Allan, Simon, Hafeez, Haroon, Simões, Catarina, Sigurdardottir, Katrin Ruth, Rasmussen, Birgit H., and Williamson, Paula
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EXPERIMENTAL design ,HUMANITY ,RESEARCH methodology ,HEALTH outcome assessment ,TERMINAL care ,SYSTEMATIC reviews - Abstract
Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. Methods: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. Discussion: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses. [ABSTRACT FROM AUTHOR]
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- 2020
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20. Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study
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Berivan Yildiz, Simon Allan, Misa Bakan, Pilar Barnestein-Fonseca, Michael Berger, Mark Boughey, Andri Christen, Gustavo G De Simone, Martina Egloff, John Ellershaw, Eline E C M Elsten, Steffen Eychmüller, Claudia Fischer, Carl Johan Fürst, Eric C T Geijteman, Gabriel Goldraij, Anne Goossensen, Svandis Iris Halfdanardottir, Dagny Faksvåg Haugen, Christel Hedman, Tanja Hoppe, Rosemary Hughes, Grethe Skorpen Iversen, Melanie Joshi, Hana Kodba-Ceh, Ida J Korfage, Urska Lunder, Nora Lüthi, Maria Luisa Martín-Roselló, Stephen Mason, Tamsin McGlinchey, Silvi Montilla, Birgit H Rasmussen, Inmaculada Ruiz-Torreras, Maria E C Schelin, Katrin Ruth Sigurdardottir, Valgerdur Sigurdardottir, Judit Simon, Ruthmarijke Smeding, Kjersti Solvåg, Julia Strupp, Vilma Tripodoro, Hugo M van der Kuy, Carin C D van der Rijt, Lia van Zuylen, Verónica I Veloso, Eva Vibora-Martin, Raymond Voltz, Sofia C Zambrano, Agnes van der Heide, Internal medicine, Public Health, Medical Oncology, Pharmacy, [Yildiz, Berivan] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Elsten, Eline E. C. M.] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Geijteman, Eric C. T.] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Korfage, Ida J.] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [van der Heide, Agnes] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Allan, Simon] Arohanui Hosp, Palmerston North, New Zealand, [Bakan, Misa] Univ Clin Resp & Allerg Dis Golnik, Res Dept, Golnik, Slovenia, [Kodba-Ceh, Hana] Univ Clin Resp & Allerg Dis Golnik, Res Dept, Golnik, Slovenia, [Lunder, Urska] Univ Clin Resp & Allerg Dis Golnik, Res Dept, Golnik, Slovenia, [Barnestein-Fonseca, Pilar] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Martin-Rosello, Maria Luisa] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Ruiz-Torreras, Inmaculada] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Vibora-Martin, Eva] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Barnestein-Fonseca, Pilar] Ibima Inst, Grp C08 Pharma Econ Clin & Econ Evaluat Medicat &, Malaga, Spain, [Berger, Michael] Med Univ Vienna, Ctr Publ Hlth, Dept Hlth Econ, Vienna, Austria, [Fischer, Claudia] Med Univ Vienna, Ctr Publ Hlth, Dept Hlth Econ, Vienna, Austria, [Simon, Judith] Med Univ Vienna, Ctr Publ Hlth, Dept Hlth Econ, Vienna, Austria, [Boughey, Mark] St Vincents Hosp Melbourne, Dept Palliat Care, Fitzroy, Vic, Australia, [Christen, Andri] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Egloff, Martina] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Eychmuller, Steffen] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Luthi, Nora] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Zambrano, Sofia C.] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [De Simone, Gustavo G.] Inst Pallium Latinoamer, Res Network Red InPal, Buenos Aires, DF, Argentina, [Tripodoro, Vilma] Inst Pallium Latinoamer, Res Network Red InPal, Buenos Aires, DF, Argentina, [Ellershaw, John] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Hughes, Rosemary] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Mason, Stephen] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [McGlinchey, Tamsin] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Smeding, Ruthmarijke] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Elsten, Eline E. C. M.] Erasmus MC Univ Med Ctr Rotterdam, Erasmus MC Canc Inst, Dept Med Oncol, Rotterdam, Netherlands, [Geijteman, Eric C. T.] Erasmus MC Univ Med Ctr Rotterdam, Erasmus MC Canc Inst, Dept Med Oncol, Rotterdam, Netherlands, [van der Rijt, Carin C. D.] Erasmus MC Univ Med Ctr Rotterdam, Erasmus MC Canc Inst, Dept Med Oncol, Rotterdam, Netherlands, [Furst, Carl Johan] Lund Univ, Inst Palliat Care, Lund, Sweden, [Hedman, Christel] Lund Univ, Inst Palliat Care, Lund, Sweden, [Rasmussen, Birgit H.] Lund Univ, Inst Palliat Care, Lund, Sweden, [Schelin, Maria E. C.] Lund Univ, Inst Palliat Care, Lund, Sweden, [Furst, Carl Johan] Lund Univ, Reg Skane, Lund, Sweden, [Hedman, Christel] Lund Univ, Reg Skane, Lund, Sweden, [Rasmussen, Birgit H.] Lund Univ, Reg Skane, Lund, Sweden, [Schelin, Maria E. C.] Lund Univ, Reg Skane, Lund, Sweden, [Furst, Carl Johan] Lund Univ, Dept Clin Sci, Div Oncol & Pathol, Lund, Sweden, [Hedman, Christel] Lund Univ, Dept Clin Sci, Div Oncol & Pathol, Lund, Sweden, [Schelin, Maria E. C.] Lund Univ, Dept Clin Sci, Div Oncol & Pathol, Lund, Sweden, [Goldraij, Gabriel] Hosp Privado Univ Cordoba, Internal Med Palliat Care Program, Cordoba, Argentina, [Goossensen, Anne] Univ Humanistic Studies, Informal Care & Care Eth, Utrecht, Netherlands, [Halfdanardottir, Svandis Iris] Landspitali Natl Univ Hosp, Palliat Care Unit, Reykjavik, Iceland, [Sigurdardottir, Valgerdur] Landspitali Natl Univ Hosp, Palliat Care Unit, Reykjavik, Iceland, [Haugen, Dagny Faksvag] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Iversen, Grethe Skorpen] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Sigurdardottir, Katrin Ruth] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Solvag, Kjersti] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Haugen, Dagny Faksvag] Univ Bergen, Dept Clin Med K1, Bergen, Norway, [Hedman, Christel] Stiftelsen Stockholms Sjukhem, Res Dept, Stockholm, Sweden, [Hoppe, Tanja] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Joshi, Melanie] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Strupp, Julia] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Hoppe, Tanja] Univ Cologne, Univ Hosp, Cologne, Germany, [Joshi, Melanie] Univ Cologne, Univ Hosp, Cologne, Germany, [Strupp, Julia] Univ Cologne, Univ Hosp, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Univ Hosp, Cologne, Germany, [Martin-Rosello, Maria Luisa] IBIMA Inst, Grp CA15 Palliat Care, Malaga, Spain, [Ruiz-Torreras, Inmaculada] IBIMA Inst, Grp CA15 Palliat Care, Malaga, Spain, [Montilla, Silvi] Univ Buenos Aires, Inst Med Res A Lanari, Buenos Aires, DF, Argentina, [Tripodoro, Vilma] Univ Buenos Aires, Inst Med Res A Lanari, Buenos Aires, DF, Argentina, [Veloso, Veronica, I] Univ Buenos Aires, Inst Med Res A Lanari, Buenos Aires, DF, Argentina, [Sigurdardottir, Katrin Ruth] Haukeland Hosp, Dept Anaesthesia & Surg Serv, Specialist Palliat Care Team, Bergen, Norway, [van der Kuy, Hugo M.] Univ Med Ctr, Dept Clin Pharm, Erasmus MC, Rotterdam, Netherlands, [van Zuylen, Lia] Univ Amsterdam, Dept Med Oncol, Med Ctr, Amsterdam, Netherlands, [Voltz, Raymond] Univ Cologne, Fac Med, Ctr Integrated Oncol Aachen Bonn Cologne Dusseldo, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Fac Med, Clin Trials Ctr ZKS, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Fac Med, Ctr Hlth Serv Res ZVFK, Cologne, Germany, [Zambrano, Sofia C.] Univ Bern, Inst Social & Prevent Med ISPM, Bern, Switzerland, European Union, University of Humanistic Studies, A meaningful life in a just and caring society, and General Practice
- Subjects
palliative care ,Terminally-ill ,Questionnaire ,public health ,610 Medicine & health ,General Medicine ,adult palliative care ,SDG 3 - Good Health and Well-being ,Cancer-patients ,360 Social problems & social services ,End ,Perspective ,Validation ,Perceptions ,Quality-of-life ,Adaptation - Abstract
IntroductionAdequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.Methods and analysisThe iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights.Ethics and disseminationThe cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying.Trial registration numberNCT04271085.
- Published
- 2022
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