Pain is the hallmark feature of sickle cell disease (SCD), a life-limiting chronic
illness that disproportionately affects African Americans. Well-documented racial
disparities complicate effective pain control and the under-treatment of pain experienced
by Black Americans with SCD. Approximately 20% of youth with SCD develop chronic pain and
experience significant functional impairment, diminished quality of life, and comorbid
depression and anxiety that can worsen over time. Youth with chronic SCD pain often are
stuck in a vicious cycle of pain, functional impairment, and pain-related fear of
movement that contributes to activity avoidance and exacerbates pain. The most effective
chronic SCD pain management requires multicomponent, interdisciplinary treatment
approaches that include integrative mind-body treatments. Mind-body approaches,
specifically diaphragmatic breathing, progressive muscle relaxation, and guided imagery,
can improve outcomes for youth with chronic pain. However, multicomponent interventions
tailored for chronic SCD pain have never been established. Most pain interventions are
developed and studied largely with white youth, do not address cultural influences, and
consequently have limited generalizability for minoritized populations that experience
health disparities like SCD. There is a critical need for effective, culturally tailored,
integrative pain management approaches to address health disparities and improve outcomes
for youth with SCD whose chronic pain can persist into adulthood.
To address this unmet need, the researchers will leverage an existing innovative
intervention designed for juvenile fibromyalgia, the Fibromyalgia Integrative Training
for Teens (FIT Teens). Recent clinical practice guidelines for SCD pain identified
fibromyalgia as most closely aligned with chronic pain in SCD to inform treatment
recommendations; thus, FIT Teens is well-suited for adaptation and testing for SCD. FIT
Teens is an 8-week (16 session) group-based telehealth intervention that combines
mind-body, cognitive-behavioral, and neuromuscular movement approaches. Early trials of
FIT Teens found excellent patient engagement, and medium to large effects on reducing
disability, pain, depressive symptoms, and fear of movement without adverse effects of
pain exacerbation. An ongoing multicenter trial of FIT Teens has excellent patient
retention (>80%, n=300 enrolled). The mind-body, cognitive-behavioral, and neuromuscular
movement treatment components will form the basis of a new multicomponent integrative
intervention tailored for SCD, Integrative Strong Body and Mind Training (I-STRONG) for
SCD.
Aim 1 of this study is to adapt and refine the integrative components of the FIT Teens
intervention to develop a new culturally tailored I-STRONG intervention for youth with
chronic SCD pain. The investigators will conduct mixed method approaches and purposive
sampling to collect qualitative feedback informed by patient and family lived experiences
regarding intervention content, format, perceived benefits, and barriers/facilitators to
engagement from 15 patients (12 to 18 years of age) with chronic SCD pain and their
parents and about 8 adolescents and 8 parents to participate in stakeholder advisory
boards. Community stakeholder advisory boards and iterative design will inform
intervention adaptation and refinement to enhance clinical implementation. Outcome
measures are not collected from participants in Aim 1 as the purpose of this part of the
study is to prepare the I-STRONG intervention to be studied for Aim 2.
Aim 2 of the study is to assess feasibility and acceptability of I-STRONG intervention
for youth with chronic SCD pain. The investigators will conduct a single-arm
proof-of-concept study of the I-STRONG intervention with 12 adolescents (12 to 18 years
of age) to iteratively optimize the feasibility and acceptability of I-STRONG in youth
with chronic SCD pain. Feasibility will be demonstrated by rates of study enrollment,
retention, and adherence (target goals set at ≥ 75%). Acceptability will be demonstrated
by treatment burden, satisfaction, and tolerability. Qualitative feedback about the
program format and content will inform additional intervention optimization, refinement,
and enhance feasibility and acceptability.