Palliative-supportive therapy offer in allogeneic stem cell transplantation (AlloPaS)

German Version

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)

Project Description

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.