The investigators will conduct a pilot feasibility and efficacy trial of a newly developed family health communication tool (called Let's Get REAL) in increasing youth involvement in real-time stem cell transplant and cellular therapy decisions (SCTCT). The investigators will pilot the intervention among 24 youth and their parents, stratified by youth age (stratum 1, 8-12 years of age and stratum 2, 13-17 years of age).
Children or adolescents 8-17 years of age referred for SCTCT.
Diagnosis of malignant or nonmalignant disorder.
Referred for any type of SCTCT. Autologous and allogeneic stem cell and cellular therapies are eligible.
Planning to meet with a provider to discuss SCTCT.
Active medical problems severe enough to preclude study participation at the time of recruitment.
Patients who are otherwise eligible, but whose primary transplant physician does not want them to participate in the study.
Lacks cognitive capacity to complete study activities, as determined by consenting professional.
Their youth referred for SCTCT does not assent to participate.
Parallel
Let's Get REAL
BehavioralFamily health communication tool
Feasibility of intervention as measured by the Feasibility of Intervention questionnaire
This is a 4-item scale that youth and their parents report feasibility of the intervention on a 5-point Likert scale ranging from 'Completely disagree' to Completely agree'. A higher score indicates greater feasibility.
Acceptability of intervention as measured by the Acceptability of Intervention questionnaire
This is a 4-item scale that youth and their parents report acceptability of the intervention on a 5-point Likert scale ranging from 'Completely disagree' to Completely agree'. A higher score indicates greater acceptability.
Appropriateness of intervention as measured by the Intervention of Appropriateness questionnaire
This is a 4-item scale that youth and their parents report appropriateness of the intervention on a 5-point Likert scale ranging from 'Completely disagree' to Completely agree'. A higher score indicates greater appropriateness.
Feasibility of intervention as measured qualitatively
Content analysis of open-ended survey responses and quotations from individual interviews. Will be collecting number of feasibility content codes.
Difference in feasibility scores in those 8-12 years of age and those 13-17 years of age as measured by the Feasibility of Intervention questionnaire
This is a 4-item scale that youth and their parents report feasibility of the intervention on a 5-point Likert scale ranging from 'Completely disagree' to Completely agree'. A higher score indicates greater feasibility.
Difference in acceptability scores in those 8-12 years of age and those 13-17 years of age as measured by the Acceptability of Intervention questionnaire
This is a 4-item scale that youth and their parents report acceptability of the intervention on a 5-point Likert scale ranging from 'Completely disagree' to Completely agree'. A higher score indicates greater acceptability.
Difference in appropriateness scores in those 8-12 years of age and those 13-17 years of age as measured by the Intervention of Appropriateness questionnaire
This is a 4-item scale that youth and their parents report appropriateness of the intervention on a 5-point Likert scale ranging from 'Completely disagree' to Completely agree'. A higher score indicates greater appropriateness.
Perceived levels of decision-making involvement in youth 8-17 years of age and their parents as measured by the Decision Making Involvement Scale
This is a 30-item scale that youth and their parents report youth involvement behaviors in a decision related to their illness on a 4-point Likert scale ranging from 'A Little Bit' to 'A Lot'. The higher the subscale score (child seek, child express, parent seek, parent express, and joint/options), the more that behavior or type of involvement occurred in the decision making process.
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Washington University School of Medicine
Lead sponsor
National Cancer Institute (NCI)
Collaborator
St. Louis Children's Hospital Foundation
Collaborator
