Let's Get REAL: Family Health Communication Tool in Pediatric Stem Cell Transplant and Cellular Therapy
About this study
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).
- Condition
- Hematologic Malignancy, Solid Tumor, Sickle Cell Disease, Aplastic Anemia, Immune Deficiency, Metabolic Disorder
- Tested
- Let's Get REAL
- Sponsor
- Washington University School of Medicine
Who can join
- Age
- 8 years and older
- Sex
- All sexes
- Healthy volunteers
- Not accepted
Inclusion 13
- Minimum age: 8 years
- Study condition: Hematologic Malignancy, Solid Tumor, Sickle Cell Disease, Aplastic Anemia, Immune Deficiency, Metabolic Disorder
- 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.
- Must have the ability to understand and willingness to consent to participate after reviewing an IRB approved informed assent document.
- Must speak English and be cognitively able to participate.
- Parent or guardian of a child 8-17 years of age with any diagnosis referred for any type of SCTCT.
- Diagnoses may include malignant and nonmalignant disorders.
- Autologous and allogeneic stem cell and cellular therapies are eligible.
- Parent or guardian is defined as an adult who usually cares for the youth and has authority to make medical decisions for them.
- Must have the ability to understand and willingness to consent to participate after reviewing an IRB approved informed consent document.
Exclusion 4
- 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.
Where
1 site, 1 recruiting
Washington University School of Medicine
St Louis, Missouri, United States
Contact
-
Ginny L Schulz, Ph.D., RN, CPNP-PC
314-454-6018 schulz_g@wustl.edu
Potential match only. Final eligibility is determined by the study team.