Developing a supportive and palliative care intervention for patients with allogeneic stem cell transplantation: protocol of a multicentre mixed-methods study (allo-PaS).

Autor:	Pralong A; Department of Palliative Medicine, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany anne.pralong@uk-koeln.de.; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Herling M; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Department of Hematology, Cellular Therapy, and Hemostaseology, Faculty of Medicine, University of Leipzig, Leipzig, Sachsen, Germany.; Department of Internal Medicine I, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Holtick U; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Department of Internal Medicine I, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Scheid C; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Department of Internal Medicine I, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Hellmich M; Institute of Medical Statistics and Computational Biology (IMSB), University of Cologne, Cologne, Germany., Hallek M; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Department of Internal Medicine I, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Pauli B; Department of Palliative Medicine, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Reimer A; Department of Palliative Medicine, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Schepers C; Department of Palliative Medicine, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany., Simon ST; Department of Palliative Medicine, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Centre for Integrated Oncology Aachen-Bonn-Cologne-Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.; Centre for Health Services Research, Faculty of Medicine and University Hospital of Cologne, Cologne, Germany.
Jazyk:	angličtina
Zdroj:	BMJ open [BMJ Open] 2023 Aug 31; Vol. 13 (8), pp. e066948. Date of Electronic Publication: 2023 Aug 31.
DOI:	10.1136/bmjopen-2022-066948
Abstrakt:	Introduction: Although allogeneic stem cell transplantation (allo-SCT) is a curative treatment for many haematological malignancies, it is often associated with a high morbidity and mortality. Yet, little is known about the needs for supportive and palliative care among allo-SCT recipients. Moreover, targeted interventions that reduce symptom burden and suffering are still lacking. The present study aims to inform a supportive-palliative care intervention for patients with allo-SCT and their informal carers by exploring their experience and assessing their needs, especially their existential concerns, regarding four research topics: symptom burden and quality of life; coexistence of a chance for cure and a relevant risk of dying; change in goals of care; dying phase. Methods and Analysis: This is a descriptive mixed-methods study in progress with a convergent parallel design. Data on the four research topics will be collected and analysed separately in three steps: (1) qualitative semi-structured interviews among 20 patients, 20 informal carers and 12 healthcare providers (HCPs) and focus groups among 12-24 HCPs; (2) a quantitative cross-sectional survey with validated questionnaires and self-developed questions among 100 patients, 100 informal carers and 50 HCPs; (3) a retrospective case analysis of all deceased patients who underwent an allo-SCT between 2010 and 2019, with collection of quantitative and qualitative data. The qualitative and quantitative data sets will be finally merged for comparison and interpretation. Results will serve to develop a supportive-palliative care intervention. Ethics and Dissemination: The Ethics Commission of the Faculty of Medicine of the University of Cologne approved this study (20-1370_2). The study results will be published in peer-review journals, be presented at congresses and will be translated into clinical practice through the development of the palliative-supportive care intervention. Trial Registration Number: DRKS00027290 (German Clinical Trials Register). Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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