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Article ; Online: Dying at home: What is needed? Findings from a nationwide retrospective cross-sectional online survey of bereaved people in Germany.

Kasdorf, Alina / Voltz, Raymond / Strupp, Julia

2024 , Page(s) 1–9

Abstract: Objectives: According to the "Last Year of Life in Cologne" study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, ...

Abstract	Objectives: According to the "Last Year of Life in Cologne" study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home - if this is their preferred place of death. Our aim was to identify the factors that make it possible for people to die at home and to analyze factors of dying at home. Methods: Germany-wide quantitative cross-sectional online survey of bereaved adult relatives. Results: The needs of 320 relatives of patients who wished to die at home were explored. Of these, 198 patients died at home and 122 did not. In the last 3 months of life, caregivers needed support in managing out-of-hours care ( Significance of results: The process of dying at home begins long before the actual dying phase. To minimize caregiver burden and improve symptom management, advanced home care plans are needed, with ongoing reassessment of family preferences and abilities.
Language	English
Publishing date	2024-03-27
Publishing country	England
Document type	Journal Article
ZDB-ID	2454009-2
ISSN	1478-9523 ; 1478-9515
ISSN (online)	1478-9523
ISSN	1478-9515
DOI	10.1017/S1478951524000440
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Book ; Online ; Thesis: The Last Year of Life in Cologne: Comparison of health care provision for terminally ill cancer and non-cancer patients

Kasdorf, Alina [Verfasser] / Jung, Norma [Gutachter] / Köpke, Sascha [Gutachter]

2023

Author's details	Alina Kasdorf ; Gutachter: Norma Jung, Sascha Köpke
Keywords	Medizin, Gesundheit ; Medicine, Health
Subject code	sg610
Language	German
Publisher	Universitäts- und Stadtbibliothek Köln
Publishing place	Köln
Document type	Book ; Online ; Thesis
Database	Digital theses on the web

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Article ; Online: Dying in hospital is worse for non-cancer patients. A regional cross-sectional survey of bereaved relatives' views.

Kasdorf, Alina / Dust, Gloria / Schippel, Nicolas / Pfaff, Holger / Rietz, Christian / Voltz, Raymond / Strupp, Julia

European journal of cancer care

2022 Volume 31, Issue 6, Page(s) e13683

Abstract: Objective: The aim of the study is to examine differences in hospital care between patients with cancer and non-cancer conditions in their dying phase, perceived by bereaved relatives.: Methods: A retrospective cross-sectional post-bereavement survey, ...

Abstract	Objective: The aim of the study is to examine differences in hospital care between patients with cancer and non-cancer conditions in their dying phase, perceived by bereaved relatives. Methods: A retrospective cross-sectional post-bereavement survey, with the total population of 351 deceased, 91 cancer patients and 46 non-cancer patients, who spent their last 2 days of life in hospital. A validated German version of the VOICES-questionnaire ('VOICES-LYOL-Cologne') was used. Results: There were substantial differences between the two groups in the rating of sufficient practical care such as pain relief or support to eat or drink (p = 0.005) and sufficient emotional care needs (p = 0.006) and in the quality of communication with healthcare professionals (p < 0.001), with non-cancer patients scoring lowest in all these dimensions. Conclusion: In all surveyed dimensions on the quality of care in the dying phase, non-cancer patients' relatives rated the provided care worse than those of cancer patients. To compensate any differences in care in the dying phase between diagnosis groups, hospital care should be provided as needs-oriented and non-indication-specific.
MeSH term(s)	Humans ; Terminal Care/psychology ; Cross-Sectional Studies ; Family/psychology ; Retrospective Studies ; Bereavement ; Hospitals ; Surveys and Questionnaires ; Neoplasms/psychology ; Palliative Care/psychology
Language	English
Publishing date	2022-08-22
Publishing country	England
Document type	Journal Article
ZDB-ID	1303114-4
ISSN	1365-2354 ; 0961-5423 ; 1360-5801
ISSN (online)	1365-2354
ISSN	0961-5423 ; 1360-5801
DOI	10.1111/ecc.13683
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Article ; Online: The last year of life for patients dying from cancer vs. non-cancer causes: a retrospective cross-sectional survey of bereaved relatives.

Kasdorf, Alina / Dust, Gloria / Hamacher, Stefanie / Schippel, Nicolas / Rietz, Christian / Voltz, Raymond / Strupp, Julia

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

2022 Volume 30, Issue 6, Page(s) 4971–4979

Abstract: Purpose: To compare health care experiences of patients with cancer or non-cancer diseases in their last year of life.: Methods: A cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire ( ... ...

Abstract	Purpose: To compare health care experiences of patients with cancer or non-cancer diseases in their last year of life. Methods: A cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson's chi-square test and Mann-Whitney U test. Results: We collected data from 351 bereaved relatives. More than half of non-cancer patients were not informed that their disease could lead to death (p < 0.001). When this was communicated, in 46.7% of non-cancer and 64.5% of cancer patients, it was reported by the hospital doctor (p = 0.050). In all, 66.9% of non-cancer and 41.6% of cancer patients were not informed about death being imminent (p < 0.001). On average, non-cancer patients had significantly fewer transitions and hospital stays in their last year of life (p = 0.014; p = 0.008, respectively). Non-cancer patients were treated more often by general practitioners, and cancer patients were treated more often by specialists (p = 0.002; p = 0.002, respectively). A substantially lower proportion of non-cancer patients were treated by at least one member of or in the setting of general or specialized palliative care (p < 0.001). Conclusions: Non-cancer patients experience disadvantages in communication regarding their care and in access to specialized palliative care in their last year of life compared to cancer patients. Regarding the assessment of palliative care needs and the lack of communication of an incurable disease, non-cancer patients are underserved. An early identification of patients requiring palliative care is a major public health concern and should be addressed irrespective of diagnosis. Trial registration: Prospectively registered by the German Clinical Trials Register (DRKS00011925, data of registration: 13.06.2017).
MeSH term(s)	Bereavement ; Cross-Sectional Studies ; Family ; Humans ; Neoplasms/therapy ; Palliative Care ; Retrospective Studies ; Surveys and Questionnaires ; Terminal Care
Language	English
Publishing date	2022-02-21
Publishing country	Germany
Document type	Journal Article
ZDB-ID	1134446-5
ISSN	1433-7339 ; 0941-4355
ISSN (online)	1433-7339
ISSN	0941-4355
DOI	10.1007/s00520-022-06908-8
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Article ; Online: Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers.

Knop, Jannis / Dust, Gloria / Kasdorf, Alina / Schippel, Nicolas / Rietz, Christian / Strupp, Julia / Voltz, Raymond

Palliative & supportive care

2022 , Page(s) 1–9

Abstract: Objectives: Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of ... ...

Abstract	Objectives: Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers. Methods: This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process. Results: Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want. Significance of results: Our findings suggest the necessity for greater awareness of patients' and their relatives' needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.
Language	English
Publishing date	2022-03-10
Publishing country	England
Document type	Journal Article
ZDB-ID	2454009-2
ISSN	1478-9523 ; 1478-9515
ISSN (online)	1478-9523
ISSN	1478-9515
DOI	10.1017/S1478951522000165
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Book ; Online: Reform der Einheitlichen Ansprechpartner (EA)

Holz, Michael / Icks, Annette / Kasdorf, Alina / Levering, Britta

Anregungen von europäischen Good-Practice-Beispielen = Reform of the points of single contact (PSCs)

(IfM-Materialien ; Nr. 264)

2018

Abstract: Ausgangspunkt der Studie ist der Rückstand Deutschlands gegenüber anderen EU-Ländern bei der Implementierung des Einheitlichen Ansprechpartners. Basierend auf leitfadengestütz-ten Experteninterviews stellt die Studie die stärker digitalisierten EA- ... ...

Author's details	von Michael Holz, Annette Icks und Britta Levering ; unter Mitarbeit von Alina Kasdorf
Series title	IfM-Materialien ; Nr. 264
Abstract	Ausgangspunkt der Studie ist der Rückstand Deutschlands gegenüber anderen EU-Ländern bei der Implementierung des Einheitlichen Ansprechpartners. Basierend auf leitfadengestütz-ten Experteninterviews stellt die Studie die stärker digitalisierten EA-Systeme in Österreich und Dänemark vor und leitet daraus Handlungsempfehlungen für Deutschland ab. Neben notwendigen Fortschritten im Bereich des E-Government sollten die wirtschaftspolitischen Akteure - u.a. mit Hilfe einer Koordinierungsgruppe - den Aufbau weitgehend einheitlicher, modular konzipierter Strukturen für die Weiterentwicklung der EA-Landesportale anstreben und dabei auch relevante externe Stakeholder einbeziehen. Die Konsolidierung von beste-henden Parallelangeboten sollte im Wege eines speziellen Beirates erfolgen. Weitere Empfehlungen betreffen u.a. den inhaltlich-thematischen Aufbau der EA-Portale, die (indirekte) Verfahrensabwicklung sowie die stärkere Automatisierung der Helpdesk-Funktion des EA. Starting point of the present study is the weak German performance compared to other EU-countries in implementing fully operational Points of Single Contact (PSCs). Based on half-standardized expert interviews, the study presents the more advanced PSC-systems in Austria and Denmark and derives policy recommendations for Germany. In addition to necessary improvements in the field of e-government, policy actors should aspire to accomplish largely harmonised, modularly designed structures for the reformed PSC-portals in the 16 German federal states - also with the help of a coordination group and the cooperation with relevant external stakeholders. The consolidation of existing parallel support services should be achieved through a specific board. Further recommendations refer to the contents and structure of the PSC-portals, the completion of procedures and formalities through the PSC and the stronger automation of the PSC's helpdesk function.
Keywords	Einheitlicher Ansprechpartner (EA) ; Europäische Dienstleistungsrichtlinie ; One-Stop-Shop ; E-Government ; Mittelstandspolitik ; internationale Good-Practice-Beispiele ; Point of Single Contact (PSC) ; European Services Directive ; eGovernment ; policies on Mittelstand enterprises ; international good-practice-examples
Language	German
Size	1 Online-Ressource (circa 55 Seiten), Illustrationen
Publisher	Institut für Mittelstandsforschung Bonn
Publishing place	Bonn
Document type	Book ; Online
Note	Zusammenfassung in englischer Sprache
Database	ECONomics Information System

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Article ; Online: What are the risk factors for avoidable transitions in the last year of life? A qualitative exploration of professionals' perspectives for improving care in Germany.

Kasdorf, Alina / Dust, Gloria / Vennedey, Vera / Rietz, Christian / Polidori, Maria C / Voltz, Raymond / Strupp, Julia

BMC health services research

2021 Volume 21, Issue 1, Page(s) 147

Abstract: Background: Little is known about the nature of patients' transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term ... ...

Abstract	Background: Little is known about the nature of patients' transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term facilities including nursing homes and hospices. The perspective of healthcare professionals can therefore provide information on transitions in the LYOL that are avoidable from a medical perspective. This study aims to explore factors influencing avoidable transitions across healthcare settings in the LYOL and to disclose how these could be prevented. Methods: Two focus groups (n = 11) and five individual interviews were conducted with healthcare professionals working in hospitals, hospices and nursing services from Cologne, Germany. They were asked to share their observations about avoidable transitions in the LYOL. The data collection continued until the point of information power was reached and were audio recorded and analysed using qualitative content analysis. Results: Four factors for potentially avoidable transitions between care settings in the LYOL were identified: healthcare system, organization, healthcare professional, patient and relatives. According to the participants, the most relevant aspects that can aid in reducing unnecessary transitions include timely identification and communication of the LYOL; consideration of palliative care options; availability and accessibility of care services; and having a healthcare professional taking main responsibility for care planning. Conclusions: Preventing avoidable transitions by considering the multicomponent factors related to them not only immediately before death but also in the LYOL could help to provide more value-based care for patients and improving their quality of life.
MeSH term(s)	Female ; Germany/epidemiology ; Humans ; Patient Transfer ; Qualitative Research ; Quality Improvement ; Quality of Life ; Risk Factors ; Terminal Care
Language	English
Publishing date	2021-02-15
Publishing country	England
Document type	Journal Article
ISSN	1472-6963
ISSN (online)	1472-6963
DOI	10.1186/s12913-021-06138-4
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Book ; Online: Neue Ansätze für die Mittelstandspolitik

Holz, Michael / Kasdorf, Alina / Levering, Britta / May-Strobl, Eva

Impulse von internationalen Good-Practice-Beispielen = New approaches for "Mittelstand" policies

(IfM-Materialien ; Nr. 262)

2017

Abstract: Die vorliegende Studie identifiziert anhand von vier internationalen Good-Practice Beispielen innovative Ansatzpunkte für die Mittelstandspolitik. Die dargestellten Maßnahmen beziehen sich auf die traditionelle Mittelstandspolitik, wie die Verankerung ... ...

Author's details	Michael Holz, Britta Levering und Eva May-Strobl ; unter Mitarbeit von Alina Kasdorf
Series title	IfM-Materialien ; Nr. 262
Abstract	Die vorliegende Studie identifiziert anhand von vier internationalen Good-Practice Beispielen innovative Ansatzpunkte für die Mittelstandspolitik. Die dargestellten Maßnahmen beziehen sich auf die traditionelle Mittelstandspolitik, wie die Verankerung einer Kultur der Selbstständigkeit (Kanada/Österreich), als auch auf die Wahrnehmung von mittelstandsspezifischen Querschnittsaufgaben ohne originäre Zuständigkeit der Mittelstandspolitik: digitale Verwaltung (Estland), digitale Bildung (Niederlande/Finnland). Die analysierten Good-Practice- Beispiele machen deutlich, dass es bei komplexen, neuartigen Politikmaßnahmen hilfreich ist, eine gemeinsame Vision und Umsetzungsstrategie unter Einbindung aller relevanten Stakeholder (Ministerien, Unternehmen, Organisationen und Experten) zu entwickeln. Auch sollten die Maßnahmen in einem Trial-and-Error-Prozess mit begleitenden Unterstützungsmaßnahmen umgesetzt werden, ohne kurzfristig umfassende Erfolge zu erwarten. The present study identifies innovative approaches for "Mittelstand" policies based on four international good-practice-examples. The measures refer to traditional key areas of "Mittelstand" policies, i.e. strengthening a culture of entrepreneurship (Canada/Austria), and to important cross-sectional policy fields where "Mittelstand" policy does not have primary responsibility: digital government (Estonia), digital education (Netherlands/Finland). The analysed good-practice-examples illustrate that it is helpful to develop a common vision and implementation strategy with the active participation of all relevant stakeholders (ministries, enterprises, organisations and experts) when dealing with complex, new policy actions. The measures should be implemented in a trial-and-error-process with accompanying support instruments, without expecting comprehensive success in the short-term.
Keywords	Mittelstand ; Mittelstandspolitik ; Rahmenpolitik ; internationale Good-Practice-Beispiele ; German Mittelstand ; policies on Mittelstand enterprises ; framework policy ; international good-practice-examples
Language	German
Size	1 Online-Ressource (circa 48 Seiten)
Publisher	Institut für Mittelstandsforschung Bonn
Publishing place	Bonn
Document type	Book ; Online
Note	Zusammenfassung in englischer Sprache
Database	ECONomics Information System

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Article ; Online: Last Year of Life Study-Cologne (LYOL-C) (Part II): study protocol of a prospective interventional mixed-methods study in acute hospitals to analyse the implementation of a trigger question and patient question prompt sheets to optimise patient-centred care.

Strupp, Julia / Kasdorf, Alina / Dust, Gloria / Hower, Kira Isabel / Seibert, Melissa / Werner, Belinda / Kuntz, Ludwig / Schulz-Nieswandt, Frank / Meyer, Ingo / Pfaff, Holger / Hellmich, Martin / Voltz, Raymond

BMJ open

2021 Volume 11, Issue 7, Page(s) e048681

Abstract: Introduction: The Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved ... ...

Abstract	Introduction: The Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved relatives, is the lowest of all health service providers. Thus, the LYOL-C Part II (LYOL-C II) focuses on optimising patient-centred care in acute hospitals for patients identified to be in their last year of life. LYOL-C II aims to test an intervention for hospitals by using a two-sided (healthcare professionals (HCPs) and patients) trigger question-based intervention to 'shake' the system in a minimally invasive manner. Methods and analysis: Prospective interventional mixed-methods study following a two-phase approach: phase I, individual interviews with HCPs and patient representatives to design the intervention to maximise ease of implementation and phase II, exploratory study with two arms and a prepost design with patients in their last year of life. The intervention will consist of the Surprise Question and the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for HCPs to identify patients and provide patient-centred care, plus question prompt sheets for patients, encouraging them to initiate discussions with their HCPs. Data on transitions, changes in therapy, quality of care, palliative care integration and death of patients will be analysed. Furthermore, a staff survey (pre/post) and guided interviews with staff, patients and relatives (post) will be conducted. Finally, a formative socioeconomic impact assessment to provide evidence regarding the sustainability of the intervention will be performed. Ethics and dissemination: The study was approved by the Ethics Committee of the Faculty of Medicine of the University of Cologne (#20-1431). Results will be published in peer-reviewed journals and presented at national and international conferences. Trial registration number: DRKS00022378.
MeSH term(s)	Hospitals ; Humans ; Palliative Care ; Patient-Centered Care ; Prospective Studies ; Surveys and Questionnaires
Language	English
Publishing date	2021-07-26
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2021-048681
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Conference proceedings: Entwicklung von Maßnahmen zur Implementierung einer minimal invasiven Intervention (MINI) in das Setting allgemeiner Krankenhausstationen

Leminski, Christin / Bach, Lisa / Hower, Kira / Peter, Sophie / Werner, Belinda / Schulz-Nieswandt, Frank / Ulmer, Melissa / Kasdorf, Alina / Strupp, Julia / Voltz, Raymond / Pfaff, Holger

2022 , Page(s) 22dkvf422

Event/congress	21. Deutscher Kongress für Versorgungsforschung (DKVF); Potsdam; Deutsches Netzwerk Versorgungsforschung; 2022
Keywords	Medizin, Gesundheit
Publishing date	2022-09-30
Publisher	German Medical Science GMS Publishing House; Düsseldorf
Document type	Conference proceedings
DOI	10.3205/22dkvf422
Database	German Medical Science

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