Palliative-supportive therapy offer in allogeneic stem cell transplantation (AlloPaS)
Scientific management: Prof. Dr. Steffen Simon (Palliativmedizin), Priv.-Doz. Dr. Udo Holtick (Hämato-Onkologie, Klinik für Innere Medizin I), Priv.-Doz. Dr. Marco Herling (Hämato-Onkologie, Uniklinik Leipzig)
Contact: Berenike Pauli, Alinda Reimer, Carolin Schepers, Dr. Anne Pralong
Duration: 11/2021 – 11/2024
Funding institution: Deutsche José Carreras Leukämie Stiftung (DJCLS)
What is it about?
Allogeneic stem cell transplantation (allo-SCT) is a therapeutic option for the treatment of life-threatening diseases such as leukemias (e.g. AML, ALL). The goal is a permanent cure of the disease with a good quality of life. However, distressing side effects and complications can often occur, such as pain, nausea or diarrhea, e.g. due to an acute or chronic graft-versus-host reaction (GvHD). Although a cure can be achieved in many patients, the underlying disease or complications of treatment can also lead to an adverse outcome, including death. Therefore, patients treated with allo-SCT are confronted with an uncertain prognosis, which can be stressful for them but also for their relatives.
The health care team of the Department of Bone Marrow Transplantation, in addition to the goal of cure through allo-SCT, pursues the relief of possible symptoms in order to improve the quality of life. In addition, patients facing a change from a curative to a palliative goal of care require supportive and adequate communication of this change as well as the best possible support during their last phase of life.
Why are we conducting this study?
Despite the high need and social relevance, the evidence base as well as clinical experience to accompany and support patients* with allo-SCT and their relatives (palliative supportive care) is still very limited worldwide (El-Jawahri et al., 2016 El-Jawahri et al., 2017, El-Jawahri et al., 2020, Ferrell et. al., 2017, Mitchel, 2018). Further research is needed for an evidence-based - palliative - supportive care approach. Clinic 1 for Internal Medicine (Oncology/Hematology) and the Centre for Palliative Medicine have already jointly established initial structures of close collaboration in terms of early integration of palliative care. These structures have to be evaluated and, if necessary, adapted.
What is the aim of our study?
The aim of the study is to explore and assess the experiences and perceptions of patients with allo-SCT, their relatives and their physicians on the topics of distress, hopes, needs and dealing with a life-threatening situation. Based on these data, a palliative-supportive care intervention for patients and their relatives will be developed and evaluated in order to improve future management.
How does our study proceed?
The development of the palliative-supportive care intervention will take place in three phases. In the first phase of the research project, the study is aimed at three target groups: Patients, relatives and health care providers. These will each be asked about their experiences, needs and recommendations in the context of allo-SCT by means of an in-depth interview and/or a questionnaire survey.
In addition, focus groups will be conducted with the health care providers to understand the multidisciplinary challenges and needs in the treatment of patients with allo-SCT.
In the second phase, palliative-supportive care intervention will be defined in order to test them in clinical practice in the third phase.
If you have any questions about the study, our study team will be happy to help you. You can contact us by phone or e-mail at the addresses below.
Telephone +49 221 478-97225
Telephone +49 221 478-39228
Ferrell, B. R., Temel, J. S., Temin, S., Alesi, E. R., Balboni, T. A., Basch, E. M., Firn JI, Paice J.A., Peppercorn J.M., Phillips T., Stovall E.L., Zimmermann C., Smith T.J. (2017). Integration of Palliative Care into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update. Journal of Clinical Oncology, 35(1) 96-112. doi: 10.1200/jco.2016.70.1474
Leitlinienprogramm Onkologie (Deutsche Krebsgesellschaft - Deutsche Krebshilfe - AWMF). S3-Leitlinie Palliativmedizin für Patienten mit einer nicht heilbaren Krebserkrankung, Langversion 2.0, AWMF-Registernummer: 128/001OL. In, 2019.
El-Jawahri, A., Nelson, A. M., Gray, T. F., Lee, S. J., & LeBlanc, T. W. (2020). Palliative and End-of-Life Care for Patients with Hematologic Malignancies. Journal of Clinical Oncology, 38(9), 944. doi: 10.1200/JCO.18.02386
Mitchell, S. A. (2018). Palliative Care During and Following Allogeneic Hematopoietic Stem Cell Transplantation (HSCT). Current opinion in supportive and palliative care, 12(1), 58. doi: 10.1097/SPC.0000000000000327
El-Jawahri, A., LeBlanc, T., VanDusen, H., Traeger, L., Greer, J. A., Pirl, W. F., Jackson V.A., Telles J., Rhodes A., Spitzer T.R., McAfee S., Chen Y.A., Lee S.S., & Temel, J. S. (2016). Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation: A Randomized Clinical Trial. JAMA, 316(20), 2094-2103. doi: 10.1001/jama.2016.16786
El-Jawahri, A., Traeger, L., Greer, J. A., VanDusen, H., Fishman, S. R., LeBlanc, T. W., Pirl W.F., Jackson V.A., Telles J., Rhodes A., Li Z., Spitzer T.R., McAfee S., Chen Y.A. & Temel, J. S. (2017). Effect of inpatient palliative care during hematopoietic stem-cell transplant on psychological distress 6 months after transplant: results of a randomized clinical trial. Journal of Clinical Oncology, 35(32), 3714. Doi: 10.1200/JCO.2017.73.2800
|2004 - 2006||Master of arts (M.A.) in bioethics at the Lateran University and Università cattolica del Sacro Cuore in Rome (Italy)|
|2000 - 2004||MD (medical doctor) at the Institut d’histoire de la médecine et de la santé publique, Université de Lausanne (Switzerland)|
|1994 - 2001||Study of medicine at the Université de Lausanne (Switzerland)|
- since 2019: Cognitive and Behavioral intervention for the Management of Episodic Breathlessness in patients with advanced disease: a single-arm therapeutic exploratory trial (phase II) – CoBeMEB
- since 2019: The BETTER-B Main Trial: An International, Multicentre, Randomised Controlled Pragmatic Phase III Trial of Mirtazapine to alleviate Breathlessness in Palliative and End of Life Care
- 2011 - 2015: Evidence-based Guideline on Palliative Care for Patients with Incurable Cancer, part 1
- 2016 - 2019: Evidence-based Guideline on Palliative Care for Patients with Incurable Cancer, part 2
|Academic and Professional Career|
|Since 2021||Research associate: AlloPas (palliative-supportive therapy offer in allogeneic stem cell transplantation) at the Center for Palliative Medicine of the University Hospital Cologne|
|Since 2019||Research associate: Neo-CamCare (evaluation of webcams in neonatal intensive care units) at the IMVR of the University Hospital Cologne|
|2017 - 2019||Research Student Assistant: MAU-PD (Multidimensional Analysis of the Causes for the Low Prevalence of Ambulatory Peritoneal Dialysis in Germany)|
|2016 - 2019||Master of Science: Health Services Research at the University of Cologne|
|2012 - 2016||Bachelor of Science: Health Economics at the University of Cologne|
- Qualitative research
- Health Services Research
- Pediatrics and Neonatology
- Palliative medicine
- Medical Sociology Seminar
- Theories of Rehabilitation Science (guest lecturer)
- MAU-PD (Multidimensional Analysis of the Causes for the Low Prevalence of Ambulatory Peritoneal Dialysis in Germany)