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

• Conditions: C81-C96; Z94.80; Z94.81; Malignant neoplasms, stated or presumed to be primary, of lymphoid, haematopoietic and related tissue

• Registration Number: DRKS00027290
• Lead Sponsor: José Carreras Leukämie-Stiftung e.V.

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2022-01-10
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Complete
• Sex: All
• Target Recruitment: 290

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

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

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
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.