A Multi-Center, Prospective, Exploratory Study of the Psychosocial Impact of Donating Haematopoietic Stem Cells on Adult Sibling Donors

Study sites:

Royal Brisbane and Women’s Hospital

Westmead Hospital

The University of Queensland

Principle Investigators:

Nienke Zomerdijk

Prof Jane Turner

Prof Geoff Hill

Prof David Gottlieb

Summary:

This is a multi-center, exploratory, prospective cohort study. The purpose is to identify potential predictors of psychosocial distress and unmet needs of adult sibling haematopoietic stem cell (HSC) donors, to inform guidelines and the development of an intervention.

Official Title

The psychosocial impact of haematopoietic stem cell donation on adult sibling donors

Conditions

Haematological malignancies

Study Type

Exploratory

Study Design

Exploratory, Prospective Cohort Study

Further details

The demand for adult sibling HSC donors is escalating dramatically with improved graft-versus-host-disease (GVHD) and relapse free survival and efforts are needed to address the expectations and management of physical pain, burden of guilt and responsibility. Unfortunately there is paucity of guidelines and relevant published data. Consideration of how to cater to the psychosocial needs of sibling HSC donors is warranted and evidence of psychosocial evaluation pre- and post-donation needs to be demonstrated.

Donors complete 3 interviews and provide 3 samples of saliva (as a measurement of stress): (1) 2 weeks pre-HSC collection; (2) within 24hrs of HSC collection and; (3) 30 days post-HSC collection. An interview with Bone Marrow transplant (BMT) Coordinators explores the nature of their role, aspects of psychosocial support and formalised strategies in place to respond to donor distress.

Results will inform the development of a web-based intervention that seeks to enhance sibling donors’ self-efficacy to cope effectively with the physical and psychosocial effects of HSC donation. We aim to assess acceptability, feasibility, strengths and limitations and inform the development of a large post-doctoral study which will be required to validate the tool.

Study Start

Study start: October 2016; Expected completion: October 2018

Eligibility & Criteria

Group One: Adult sibling HSC donors of planned allogeneic transplant recipients

Group Two: BMT Coordinators

Inclusion Criteria:

• Ages Eligible for Study: 18 Years and above
• Genders Eligible for Study: Both
• Able to provide informed consent

Exclusion Criteria:

• People whose primary language is other than English
• Women who are pregnant and the human fetus
• Children and/or young people (ie. <18 years)
• People with a cognitive impairment, an intellectual disability or a mental illness

Total Enrolment

Group One: 35

Group Two: 3

Total: 38

Contact Details

QLD – Royal Brisbane and Women’s Hospital

Nienke Zomerdijk, email: Nienke.Zomerdijk@uqconnect.edu.au

Prof Jane Turner

Prof Geoff Hill

NSW – Westmead Hospital

Prof David Gottlieb