HaploDonor-QoL: Donor Health-Related Quality-of-Life and Physician Decision-Making in the Context of Haploidentical Hematopoietic Stem Cell Transplantation
UCI Specialty Area: Cancer
Principal Investigator:
Stefan Octavian Ciurea
A Study On:
Hodgkin's Lymphoma
Leukemia other
Lymphoid Leukemia
Multiple Myeloma
Myeloid and Monocytic Leukemia
Non-Hodgkin's Lymphoma
Other Hematopoietic
Study Description
The investigation will include cross-sectional cohorts of adult/adolescent haplo donors. For this study, adolescents are defined as being age 13-17. For Aim 1 we will conduct ~7 focus groups (7-10 members each) with a sample of individuals who have donated to a parent or child in the past year. Aim 2 – We will conduct one-time structured, quantitative telephone interviews with haplo donors who are 1-year post-donation to their parent or child.
Eligibility
Inclusion and
Eligibility Screening
Potential haplo donor participants will be screened for initial eligibility at individual transplant centers including meeting criteria for age, language,donor-recipient relationship (parent or child), time post-donation, and telephone accessibility. Secondary screening will be done at the time of consent to confirm that participants meet eligibility criteria.
All Aims:
Parent or child haplo HSC donor
Donation or recipient transplant managed by a participating US transplant center
Only donated once
About one year post-donation at time of selection
Age 13 years or older
Aim 1:
Competent to complete study activities in the English language (adults and teens) or in the Spanish language (adults only)
Access to email for initial and follow-up contact and consent
Access to an internet connected device or telephone to participate in a focus group
Aim 2:
Competent to complete study activities in the English language
Access to a telephone and email for initial and follow-up contact and consent
Access to a telephone to complete interview
Exclusion Criteria:
Aims 1 & 2:
Donors no longer living in the US
Aim 2:
Participated in Aim 1 focus group
Inclusion and Exclusion of Special Populations
Adults unable to consent
Exclude
Individuals who are not yet adults (infants, children, teenagers)
Include
Pregnant women
Pregnant women will not be excluded from this study, but given the minimal risks associated with the study procedures, pregnant women will not be at greater risk than other study populations.
-Prisoners
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University of California, Irvine - Study Information Sheet
UCI Center for Clinical Research Potential Participant Database
Lead Researcher
Eric Vilain, MD, PhD
UCI Center for Clinical Research
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