Longitudinal Early Advance Care Planning Discussions and Documentation (LEADD) Program: An Exploratory Study in Adolescents and Young Adults (AYAs) Receiving Hematopoietic Stem Cell Transplant

Launched by NATIONAL CANCER INSTITUTE (NCI) · Nov 3, 2022

Keywords

ClinConnect Summary

The LEADD Program is a clinical trial designed to help young adults and adolescents (ages 18 to 39) who are about to undergo a life-saving treatment called hematopoietic stem cell transplant (HSCT). This study focuses on discussing advance care planning (ACP), which is a way for patients and their families to talk about their wishes and values regarding their healthcare. By having these important conversations, the goal is to ensure that the care they receive aligns with what matters most to them, especially since HSCT can come with serious risks.

Eligible participants include young adults who are planning to have HSCT and their caregivers, who must be at least 18 years old. Throughout the study, participants will complete a short questionnaire and have three discussions with a study team member over several weeks. These conversations will cover topics like their expectations for the transplant, any fears they might have, and what kind of support they need. They will also learn about a guide called "Voicing My CHOiCES," which helps them express their preferences for care. At the end of the study, participants will receive a summary of their care priorities and share their thoughts on the discussion process. This program aims to improve communication and ensure that the care received during treatment is centered around the patient's needs and values.

Gender

ALL

Eligibility criteria

• * INCLUSION CRITERIA:
• * AYA Participants:
• • Age \>= 18 to \<= 39 years.
• • Planned allogeneic HSCT at a participating site.
• • Participants must be English speaking.
• • Ability to understand and the willingness to sign a written informed consent document.
• * Caregiver Participants:
• • Age: \>= 18 years
• • Identified as caregiver by participating AYA participant. Only a single caregiver will be allowed to participate.
• • Physically present at the participating site.
• • Participants must be English speaking.
• • Ability to understand and the willingness to sign a written informed consent document.
• * Provider participants:
• • Healthcare providers at the participating site who are part of the AYA participant s HSCT team and provided direct clinical care to AYA participants during period of study enrollment between completion of conversation #1 and conversation #3.
• EXCLUSION CRITERIA:
• • None.