Improving quality of life - Palliative-supportive care concept in allogeneic stem cell transplantation

Conditions

C81-C96 Z94.80 Z94.81

Lisanne Preuss, Steffen T. Simon, Marco Herling, U. Holtick, Alinda Reimer et al. (17 authors)

Annals of Hematology2026-04-02

A cross-sectional survey on health care professionals' approaches, challenges, and support needs when addressing life threat with recipients of an allogeneic hematopoietic stem cell transplantation and with their relatives.

Pralong A, Simon ST, Holtick U, Reimer A, Schoerger B, Kaur S, Weliwitage J, Hellmich M, Hallek M, Scheid C, Voltz R, Herling M.

2025-01-011 citations

10.1007/s00277-025-06211-6

Navigating What Is Not Known—Patients’ Experience of the Life Threat Connected to Allogeneic Stem Cell Transplantation

Alinda Reimer, Carolin Schepers, M Ley, Berenike Schoerger, Anne Pralong et al. (9 authors)

European Journal of Cancer Care2025-01-01

10.1155/ecc/8743444

The life threat in hematopoietic allogeneic stem cell transplantation - an interview and focus group study on health care professionals' perspectives.

Reimer A, Ley M, Schepers C, Pralong A, Schoerger B, Voltz R, Hallek M, Herling M, Holtick U, Simon ST.

2024-08-312 citations

10.1007/s00277-024-05967-7

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

Anne Pralong, Marco Herling, Udo Holtick, Christoph Scheid, Martin Hellmich et al. (10 authors)

BMJ Open2023-08-019 citations

10.1136/bmjopen-2022-066948

Interventions

Group 1: Patients with allogeneic stem cell transplantation will be interviewed once on the four research topics (symptom burden and quality of life

coexistence of hope for cure and fear of dying

change in goals of care

phase of dying) by means of 1) quantitative standardised* or self-developed questionnaires, 2) qualitative individual interviews or 3) retrospective chart review of patients who have already died. (*

CTXD: Cancer-and-Treatment Distress

FACIT-Sp-12: Functional Assessment of Chronic Illness Therapy – Spiritual Well-being

DADDS-G: Death and Dying Distress Scale

PHQ-9: Patient Health Questionnaire

GAD-7: Generalized Anxiety Disorder Questionnaire

LOLES: Loss orientation, life engagement and coping efforts

LAP-R: Life Attitude Profile-Revised Group 2: Informal carers of patients with allogeneic stem cell transplantation will be interviewed once on the four research topics (symptom burden and quality of

phase of dying) by means of 1) quantitative standardised* or self-developed questionnaires or 2) qualitative individual interviews. (*)ZBI-7: Short Form of the Zarit Burden Scale

FROM-16: Family Reported Outcome Measure

LAP-R: Life Attitude Profile-Revised Group 3: Health care providers of patients with allogeneic stem cell transplantation will be interviewed once on the four research topics (symptom burden and qual

phase of dying) by means of 1) quantitative self-developed questionnaires or 2) qualitative individual interviews and focus groups.

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: Patients (survey/qualitative interviews): • Deemed eligible for allo-SCT or having undergone allo-SCT • Informed consent Informal carers (survey/qualitative interviews): • Informal carers of a patient with allo-SCT • Informed consent Health care providers (survey/qualitative interviews): • Belonging to a relevant professional group (physicians, nurses, psycho-oncologists, chaplains, physiotherapists, music/art therapists, social workers) • Informed consent Retrospective chart review: • Deceased patients who had underwent an allo-SCT during 2011-2020

Exclusion criteria

Exclusion criteria: Patients and Informal carers (survey/qualitative interviews): • Non-sufficient German language skills • Severe physical impairment • Severe cognitive impairment Health care providers (survey/qualitative interviews): • Non-sufficient experience in caring for patients with allo-SCT • Non-sufficient German language skills Retrospective chart review: none

Design outcomes

Primary

Measure	Time frame
Aim of the study is to qualitatively explore the experience and to quantiatively assess the needs and coping strategies of patients with allogeneic stem cell transplantation, their informal carers and health care providers (HCPs) with regard to four research questions: symptom burden and quality of life; coexistence of hope for cure and fear of dying; change in goals of care; and dying phase.	—

Countries

Germany

Contacts

Public ContactBerenike Pauli

Zentrum für Palliativmedizin, Uniklinik Köln

allopas@uk-koeln.de0221 478 97225

Outcome results

None listed