Perspectives on Bone Marrow Donors Who Donate for Their Parent

Perspectives on the Adolescent, Young Adult, and Adult Experience as Donors for Their Parent Undergoing Haploidentical Bone Marrow Transplants

The purpose of this pilot study is to explore the role of family function on decision-making for bone marrow donors who donated for their parent, and to assess the unique supportive care needs of these participants. Semi-structured interviews were conducted with participants to identify overarching themes of the donation experience.

Study Overview

• Status: Completed
• Conditions: Bone Marrow Transplant
• Intervention / Treatment: Other: Semi-structured Interview

• Study Type: Observational
• Enrollment (Actual): 16

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 13 years and older (ADULT, OLDER_ADULT, CHILD)
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Participants included adolescents, young adults, or adults who had donated bone marrow or peripheral blood stem cells for their parent in the past 1 - 6 months.

Description

Inclusion Criteria:

• Donated bone marrow or peripheral blood stem cells for their parent in the past 1-6 months
• Willing to participate in mandatory audio recorded telephone interview
• Able to participate in interview without assistance
• Must be English speaking
• Transplant recipient (parent) must be living

Exclusion Criteria:

• Unable to provide oral consent for participation (for minors- unable to obtain parental consent and/or oral assent from child for participation)

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
bone marrow/blood stem cell donors; Participants underwent a one time semi-structured telephone interview to understand the perspectives of bone marrow/stem cell donors experience, including how family dynamics impacted participants' decision to donate and identifying unique supportive care needs of bone marrow/stem cell donors.	Other: Semi-structured Interview

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Themes influencing donors' decision-making as assessed by words used during interview responses	Words/terms are extracted from interviewer responses and associated to key themes that influence participant's decision-making process. A codebook is used to reference these words/terms	Day 1

Collaborators and Investigators

• Sponsor: Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
• Collaborators: Duke University
• Investigators: Principal Investigator: Nina D Wagner-Johnston, MD, Johns Hopkins University

Study record dates

Study Major Dates

• Study Start (ACTUAL): December 6, 2016
• Primary Completion (ACTUAL): June 29, 2017
• Study Completion (ACTUAL): June 29, 2017

Study Registration Dates

• First Submitted: November 28, 2018
• First Submitted That Met QC Criteria: November 28, 2018
• First Posted (ACTUAL): November 29, 2018

Study Record Updates

• Last Update Posted (ACTUAL): November 30, 2018
• Last Update Submitted That Met QC Criteria: November 28, 2018
• Last Verified: November 1, 2018

More Information

Terms related to this study

• Keywords: bone marrow; stem cell; donor; interview
• Other Study ID Numbers: J16127; IRB00111131 (OTHER: JHM IRB); 2016-03p (OTHER: Palliative Care Research Consortium)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: UNDECIDED

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No