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

Background:

For adolescent and young adults (AYAs) with certain life-threatening illnesses, hematopoietic stem cell transplant (HSCT) provides the best chance for cure and survival. HSCT is a life-saving therapy, but this treatment also comes with significant risks. Given these risks, it is imperative that patients and their families have the opportunity to share their values, priorities, and goals through advance care planning (ACP) to ensure that the care they receive through the transplant process remains patient-centered. Despite the benefits of ACP discussions, many barriers, including provider discomfort, may prevent these conversations with AYAs.

Objective:

To see if AYAs who undergo HSCT and their caregivers benefit from discussing ACP topics.

Eligibility:

People aged 18 to 39 years enrolled in an NIH study with a planned HSCT. One caregiver aged 18 years or older will also be invited to participate.

Design:

Participants will complete a 20-minute questionnaire. They will be asked about the priorities they have related to their care and their prior experiences with ACP.

Participants will have 3 conversations with a study team member over 4 to 9 weeks. Each talk will last 45 to 60 minutes.

First, participants will talk about their upcoming transplant and their expectations. They will also be asked about their fears and worries and will discuss what is most important to them in terms of support, comfort, their values, and their goals.

Next, they will learn about Voicing My CHOiCES . This guide gives people a place to say what kind of care they want to receive during their treatment and includes a place to document how they would want to be cared for if they can no longer make decisions on their own. Participants will be guided as they fill in a few pages from this guide.

The third conversation will review the first talks. Participants may ask questions and review any topic. They will complete follow-up questionnaires and be provided with a summary of their care priorities revealed in the discussions. They will be asked about their experience participating in this study, and their comfort with ACP discussions. They will be asked what they think of the meaningfulness, timing, and cultural sensitivity of these talks....

Background:

* Allogeneic hematopoietic stem cell transplantation (HSCT) carries a significant risk of morbidity and mortality with adolescent and young adult (AYA) patients at inherently high cumulative risk of a myriad of late effects.
* Participation in advance care planning (ACP) is crucial to promoting patient-centered care and has been shown to have positive impacts on patients, caregivers, and providers. Many barriers exist in the engagement of AYAs and HSCT recipients in ACP conversations, including provider discomfort.
* A recent retrospective review of AYA patients that received an HSCT at the NIH Clinical Center (CC) in the past 5 years identified patterns of documented ACP discussions. The study revealed that very few patients engaged in ACP discussions beyond completion of an advance directive or physician completion of a medical order. Moreover, the majority of all ACP occurred in patients that ultimately died post-HSCT with most conversations occurring in the last days and weeks of life. Documentation of conversations was scattered throughout many different note types within the electronic medical record.

Objective:

-Assess the feasibility and acceptability of a series of longitudinal conversations about ACP topics with AYA HSCT recipients and their caregivers presenting for HSCT.

Eligibility:

AYA Participants:

Age: 18 through 39 years

English-speaking

Planned HSCT at a participating site

Caregiver Participants:

Age: \>= 18

English-speaking

Identified as a caregiver by participating AYA participant

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.

Design:

This study consists of a baseline and follow-up assessments, and 3 conversation time points. For each participant, all conversations must be conducted by the same interviewer, excluding the final qualitative interview.

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.