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HaploDonor-QoL: Donor Health-Related Quality-of-Life and Physician Decision-Making in the Context of Haploidentical Hematopoietic Stem Cell Transplantation

Cancer
Stefan Octavian Ciurea
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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