Search

Your search keyword '"Christen, Andri"' showing total 12 results
Start Over Author "Christen, Andri" Publication Year Range Last 10 years
12 results on '"Christen, Andri"'

1. Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

Author

Yildiz, Berivan, van der Heide, Agnes, Bakan, Misa, Iversen, Grethe Skorpen, Haugen, Dagny Faksvåg, McGlinchey, Tamsin, Smeding, Ruthmarijke, Ellershaw, John, Fischer, Claudia, Simon, Judit, Vibora-Martin, Eva, Ruiz-Torreras, Inmaculada, Goossensen, Anne, Allan, Simon, Barnestein-Fonseca, Pilar, Boughey, Mark, Christen, Andri, Lüthi, Nora, Egloff, Martina, and Eychmüller, Steffen

Subjects
HEALTH services accessibility, PALLIATIVE treatment, HUMAN services programs, FOCUS groups, RESEARCH funding, HOSPITALS, UNCERTAINTY, DESCRIPTIVE statistics, CONCEPTUAL structures, MATHEMATICAL models, THEORY, SOCIAL support, DATA analysis software
Abstract

Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020. [ABSTRACT FROM AUTHOR]

Published
2024
Full Text
View/download PDF

2. Feasibility, acceptability and needs in telemedicine for palliative care; a scoping review

Author

Ebneter, Andreas, Eychmueller, Steffen, Sauter, Thomas, and Christen, Andri

Subjects
Palliative Care, Medicine and Health Sciences, Medical Specialties, Health Information Technology, Telemedicine
Abstract

Telemedicine interventions such as virtual visits or telemonitoring in palliative Care are complex interventions as defined by the MRC-Guidance . Their complexity arises from the numerous interacting individuals and a new technology that needs different organisational levels and structures to implement. Many of them were first implemented in countries with large distances between patient and carers such as in Australia or Canada, whereas in other regions such as in most European countries availability and use of these technologies seems to be less common and less structured, but reasons remain unclear. Therefore, the objective of this scoping review will be to evaluate the existing literature on needs, feasibility and acceptance of telemedicine tools in in-/outpatient palliative care of adult patients and caregivers as well as among health professionals .

Published
2022
Full Text
View/download PDF

3. 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

Author

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

Published
2022
Full Text
View/download PDF

4. 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

Author

Yildiz, Berivan, Allan, Simon, Bakan, Misa, Barnestein-Fonseca, Pilar, Berger, Michael, Boughey, Mark, Christen, Andri, De Simone, Gustavo G., Egloff, Martina, Ellershaw, John, Elsten, Eline E. C. M., Eychmuller, Steffen, Fischer, Claudia, Furst, Carl Johan, Geijteman, Eric C. T., Goldraij, Gabriel, Goossensen, Anne, Halfdanardottir, Svandis Iris, Haugen, Dagny Faksvag, Hedman, Christel, Hoppe, Tanja, Hughes, Rosemary, Iversen, Grethe Skorpen, Joshi, Melanie, Kodba-Ceh, Hana, Korfage, Ida J., Lunder, Urska, Luthi, Nora, Martin-Rosello, Maria Luisa, Mason, Stephen, McGlinchey, Tamsin, Montilla, Silvi, Rasmussen, Birgit H., Ruiz-Torreras, Inmaculada, Schelin, Maria E. C., Sigurdardottir, Katrin Ruth, Sigurdardottir, Valgerdur, Simon, Judith, Smeding, Ruthmarijke, Solvag, Kjersti, Strupp, Julia, Tripodoro, Vilma, van der Kuy, Hugo M., van der Rijt, Carin C. D., van Zuylen, Lia, Veloso, Veronica, I, Vibora-Martin, Eva, Voltz, Raymond, Zambrano, Sofia C., van der Heide, Agnes, Yildiz, Berivan, Allan, Simon, Bakan, Misa, Barnestein-Fonseca, Pilar, Berger, Michael, Boughey, Mark, Christen, Andri, De Simone, Gustavo G., Egloff, Martina, Ellershaw, John, Elsten, Eline E. C. M., Eychmuller, Steffen, Fischer, Claudia, Furst, Carl Johan, Geijteman, Eric C. T., Goldraij, Gabriel, Goossensen, Anne, Halfdanardottir, Svandis Iris, Haugen, Dagny Faksvag, Hedman, Christel, Hoppe, Tanja, Hughes, Rosemary, Iversen, Grethe Skorpen, Joshi, Melanie, Kodba-Ceh, Hana, Korfage, Ida J., Lunder, Urska, Luthi, Nora, Martin-Rosello, Maria Luisa, Mason, Stephen, McGlinchey, Tamsin, Montilla, Silvi, Rasmussen, Birgit H., Ruiz-Torreras, Inmaculada, Schelin, Maria E. C., Sigurdardottir, Katrin Ruth, Sigurdardottir, Valgerdur, Simon, Judith, Smeding, Ruthmarijke, Solvag, Kjersti, Strupp, Julia, Tripodoro, Vilma, van der Kuy, Hugo M., van der Rijt, Carin C. D., van Zuylen, Lia, Veloso, Veronica, I, Vibora-Martin, Eva, Voltz, Raymond, Zambrano, Sofia C., and van der Heide, Agnes

Abstract

Introduction Adequately 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 analysis The 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 dissemination The 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.

Published
2022

5. 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

Author

Yildiz, Berivan, Allan, Simon, Bakan, Misa, Barnestein-Fonseca, Pilar, Berger, Michael, Boughey, Mark, Christen, Andri, De Simone, Gustavo G., Egloff, Martina, Ellershaw, John, Elsten, Eline E.C.M., Eychmüller, Steffen, Fischer, Claudia, Fürst, Carl Johan, Geijteman, Eric C.T., Goldraij, Gabriel, Goossensen, Anne, Halfdanardottir, Svandis Iris, Haugen, Dagny Faksvåg, Hedman, Christel, Hoppe, Tanja, Hughes, Rosemary, Iversen, Grethe Skorpen, Joshi, Melanie, Kodba-Ceh, Hana, Korfage, Ida J., Lunder, Urska, Lüthi, Nora, Martín-Roselló, Maria Luisa, Mason, Stephen, Mcglinchey, Tamsin, Montilla, Silvi, Rasmussen, Birgit H., Ruiz-Torreras, Inmaculada, Schelin, Maria E.C., Sigurdardottir, Katrin Ruth, Sigurdardottir, Valgerdur, Simon, Judith, Smeding, Ruthmarijke, Solvåg, Kjersti, Strupp, Julia, Tripodoro, Vilma, Van Der Kuy, Hugo M., Van Der Rijt, Carin C.D., Van Zuylen, Lia, Veloso, Verónica I., Vibora-Martin, Eva, Voltz, Raymond, Zambrano, Sofia C., Van Der Heide, Agnes, Yildiz, Berivan, Allan, Simon, Bakan, Misa, Barnestein-Fonseca, Pilar, Berger, Michael, Boughey, Mark, Christen, Andri, De Simone, Gustavo G., Egloff, Martina, Ellershaw, John, Elsten, Eline E.C.M., Eychmüller, Steffen, Fischer, Claudia, Fürst, Carl Johan, Geijteman, Eric C.T., Goldraij, Gabriel, Goossensen, Anne, Halfdanardottir, Svandis Iris, Haugen, Dagny Faksvåg, Hedman, Christel, Hoppe, Tanja, Hughes, Rosemary, Iversen, Grethe Skorpen, Joshi, Melanie, Kodba-Ceh, Hana, Korfage, Ida J., Lunder, Urska, Lüthi, Nora, Martín-Roselló, Maria Luisa, Mason, Stephen, Mcglinchey, Tamsin, Montilla, Silvi, Rasmussen, Birgit H., Ruiz-Torreras, Inmaculada, Schelin, Maria E.C., Sigurdardottir, Katrin Ruth, Sigurdardottir, Valgerdur, Simon, Judith, Smeding, Ruthmarijke, Solvåg, Kjersti, Strupp, Julia, Tripodoro, Vilma, Van Der Kuy, Hugo M., Van Der Rijt, Carin C.D., Van Zuylen, Lia, Veloso, Verónica I., Vibora-Martin, Eva, Voltz, Raymond, Zambrano, Sofia C., and Van Der Heide, Agnes

Abstract

Introduction Adequately 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 analysis The 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 dissemination The 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 number NCT04271085.

Published
2022

7. Feasibility, acceptability and needs in telemedicine for palliative care

Author

Ebneter, Andreas S., Sauter, Thomas C., Christen, Andri, and Eychmueller, Steffen

Subjects
610 Medicine & health
Abstract

BACKGROUND Telemedicine in palliative care was initially developed in countries where geography or resources limit access to care services. Recently, largely owing to the COVID-19 pandemic, this technology is being increasingly used in highly urbanised countries such as Switzerland. However, there is still scepticism regarding whether these tools can be used effectively in palliative care, a relationship-based speciality that is generally highly dependent on compassion, communication and direct human interaction. The objective of this review was to analyse the needs, elements of feasibility, and reasons for acceptance or possible barriers before the implementation of a telemedicine intervention in Switzerland. METHODS The method used was a scoping review, following the PRISMA-ScR reporting guidelines. We searched the PubMed, Ovid SP, Medline, Cochrane and Scopus databases for relevant reports. Charting and analyses of the data were done by a single researcher. A total of 520 records were screened and assessed for eligibility. Finally, 27 studies and 4 registry entries were included. Main reasons for exclusion were wrong population and intervention. RESULTS The prevailing study type was the single-arm intervention study. Most studies originated from countries with geographic barriers to access. Feasibility was good in 69% of all studies. Good acceptability (84.1-100%) was confirmed in the majority of the studies. The needs of the patients or the healthcare professionals were directly addressed in only five (16%) studies. Three needs were consistently reported: communication, coordination and technical reliability. CONCLUSION Despite a broad range of studies on telemedicine in palliative care, patients' needs are rarely addressed. Therefore, especially in countries such as Switzerland, a needs assessment is recommended before the implementation of a new telemedicine intervention, to guarantee high feasibility and acceptability.

Published
2022
Full Text
View/download PDF

8. Sharing of Data from Clinical Research Projects – Guidance from the Swiss CTU Network

Author

Gahl, Brigitta, Haynes, Alan, Sluka, Constantin, Dupuis-Lozeron, Elise, Jörger, Francisca, Schur, Renate, Christen, Andri, and Trelle, Sven

Subjects
medicine_pharmacology_other
Abstract

Objectives: Data sharing has become a requirement of many funding bodies and is becoming a scientific standard in many disciplines. In medical research, however, data sharing can conflict with clinicians’ obligation to protect patients’ privacy. General recommendations on data sharing exist also for clinical research, but so far lack practical and Swiss-specific aspects. The objective of this document is to provide practical recommendations for all relevant aspects of data sharing in agreement with legislation in Switzerland. Methods: This document was written by members of the Swiss CTU Network, a network of academic clinical trial units. The process did not follow a formalized Delphi process. After an internal consensus round, this report is now published as pre-print for external review. A second version will incorporate external comments. We plan to publish this document as a text in progress, as we expect relevant changes in related fields such as the development of further dedicated medical repositories or methodological advances in anonymization techniques. Results: We developed principles and practical recommendations with respect to informed consent, data management plan, anonymization, data structure and format, coding of variables, metadata and documentation, version control, selection of repository, requesting and use of data. We also provide a summary of legal aspects relevant for the Swiss context. Conclusions: The intension to share data has an impact not only after a clinical trial or an observational study is completed, but also during the planning period, the conduct and the analysis phase. Clinical researchers need to be aware at the beginning of a study on how to inform patients and at least the amount of work related to preparing data for sharing, metadata, and any further documentation. This report provides details of aspects to be considered, suggests decision criteria, and provides examples and checklists, in order to support data sharing in practice.

Published
2020

12. 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

Author

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

Catalog

Books, media, physical & digital resources
See catalog results