Acceptance and Commitment Therapy for Adolescents and Young Adults With Sickle Cell Disease
ACT for SCD
Using Acceptance and Commitment Therapy (ACT) to Promote Mental Health and Transition Readiness in Youth With Sickle Cell Disease: A Community-Based Participatory Action Research (CBPAR) Approach
1 other identifier
interventional
66
1 country
1
Brief Summary
The current study seeks to build on previous research that demonstrates the efficacy of Acceptance and Commitment Therapy in combating stigma by investigating the feasibility and acceptability of a protocol to support Black adolescents and young adults in coping with race related stress. The study will consist of a small, purposeful, non-randomized sample (N = 30) of clients enrolled into a 10-session Acceptance and Commitment Therapy group. The group will be offered as part of regular clinical care at the Division of Adolescent and Young Adult Medicine. Three consecutive groups will be run with approximately 8-10 participants in each group over the next year.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for phase_1
Started Apr 2025
Longer than P75 for phase_1
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
January 5, 2023
CompletedFirst Posted
Study publicly available on registry
January 17, 2023
CompletedStudy Start
First participant enrolled
April 1, 2025
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 30, 2029
ExpectedStudy Completion
Last participant's last visit for all outcomes
June 30, 2029
May 6, 2026
April 1, 2026
4.2 years
January 5, 2023
April 30, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (4)
Total Score on Index of Race-Related Stress (IRRS)-Brief Version
Higher scores on this measure indicate greater race-related stress. The minimum score on this measure is 0 and the maximum is 88.
12 weeks
Sickle Cell Self-Efficacy Scale
a 9-item, self-administered questionnaire that measures an adult's confidence in managing sickle cell disease (SCD) day-to-day, including pain, emotions, and daily functioning.
6 mos
SCD Health-Related Internalized Stigma Scale
an 11-item tool assessing internalized stigma and other factors in sickle cell disease (SCD) patients
6 mos
Transition Readiness Assessment Questionnaire (TRAQ),
measure acquisition of transition readiness skills across the five stages of change
6 mos
Secondary Outcomes (4)
Total Scores on Acceptance and Action Questionnaire-2
12 weeks
Total Scores on Multidimensional Inventory of Black Identity-Teen (MIBI-t)
12 weeks
Total Score on Patient Health Questionaire-9
12 weeks
Total Score on General Anxiety Disorder-7
12 weeks
Study Arms (2)
Acceptance Commitment Therapy
EXPERIMENTALThis study will use a 10-session ACT protocol to support Black adolescents and young adults in coping with race related stress.
Control Group
NO INTERVENTIONWaitlist control group that will receive the intervention 3-4 months after the intervention group concludes.
Interventions
Phase I Using a convenience sample, this study examines the feasibility and acceptability of a proposed 6-session ACT group intervention for Black youth with sickle cell disease (SCD), who experience compounded stress due to chronic illness and systemic inequities. A up to 11 youth and up to 11 parents/legal guardians will be enrolled in an ACT group offered via the Division of Adolescent and Young Adult Medicine. Participants will complete assessments at pre-, and post-intervention, and at a 3-month follow-up. Up to 5 of 11 parents/legal guardians and 5 of 11 youth (not required to be dyadic) will also be a part of the studies community advisory board (CAB) to ensure the intervention is culturally and developmentally responsive and grounded in community perspectives. Phase II Over the next 3 years this study will use a community-based participatory action research approach, extending and integrating feedback data collected in Phase I, to conduct a crossover waitlist-control trial.
Eligibility Criteria
You may not qualify if:
- Prisoners or youth in detention centers Unable to understand or speak English Does not have SCD Clients who are at significant risk for suicide and self-injury will be excluded due to the intense levels of support required to support these individuals which would interfere with study procedures.
- Adolescents with families that require frequent intervention from the Department of Children and Family Services, are currently experiencing psychosis, or have severe health concerns that will impact study participation or attendance will be excluded.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Children's Hospital Los Angeles
Los Angeles, California, 90027, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Xzania Lee, PhD
Children's Hospital Los Angeles
Central Study Contacts
Study Design
- Study Type
- interventional
- Phase
- phase 1
- Allocation
- NA
- Masking
- NONE
- Purpose
- TREATMENT
- Intervention Model
- CROSSOVER
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Principal Investigator
Study Record Dates
First Submitted
January 5, 2023
First Posted
January 17, 2023
Study Start
April 1, 2025
Primary Completion (Estimated)
June 30, 2029
Study Completion (Estimated)
June 30, 2029
Last Updated
May 6, 2026
Record last verified: 2026-04
Data Sharing
- IPD Sharing
- Will not share