Mindfulness-based Intervention for Pain and Sleep in Adolescents and Young Adults with Sickle Cell Disease - The overall goal of this K99/R00 Pathway to Independence Award is to refine a digital mindfulness-based intervention (MBI) to improve pain and sleep among adolescents and young adults (AYA) with sickle cell disease (SCD) and to assess this MBI’s feasibility, acceptability, and preliminary efficacy. Among AYA with SCD, chronic pain and sleep deficiency (i.e., insufficient amount of sleep and/or poor sleep quality) are very common and have significant negative effects on health-related quality of life, including increased risk of fatigue, anxiety, and depressed mood persisting into adulthood. Although MBIs are shown to have a range of benefits for chronic pain and sleep quality in adults, less is known about their impact on pain and sleep for AYA with SCD. The proposed research is designed to address these gaps by adapting an MBI for AYA with SCD through user-centered design. The proposed training goals are for the principal investigator to (1) gain knowledge and skills to conduct SCD research; (2) acquire a comprehensive understanding of the multifaceted factors of AYA with SCD and develop expertise in adapting a digital MBI for AYA with SCD; (3) gain specialized knowledge in mixed methods research and randomized controlled trials; and (4) cultivate leadership skills and secure a tenure-track position. The specific aims for the K99 phase of this research are (1) to identify the preferences of AYA with SCD and the related facilitators and barriers to MBI use by conducting patient partnership board meetings and interviews, then use user-centered design to adapt and refine a digital MBI designed to decrease pain and sleep deficiency among AYA with SCD; and (2) to evaluate the feasibility and acceptability of the resulting digital MBI. The specific aims for the R00 phase of research are (1) to compare the MBI intervention and usual care control groups for effects on the primary outcome (pain intensity) and secondary outcomes (pain interference, sleep quality, sleep hygiene practices, fatigue, anxiety, depressed mood), then explore the dose-dependent relationship between intervention intensity and changes in the primary and secondary outcomes, as well as which specific modules of the MBI have the greatest impact on the primary and secondary outcomes; and (2) explore the effect of motivation as a mediator between the MBI and pain intensity in AYA with SCD. This K99/R00 Pathway to Independence Award will provide the applicant with the opportunity to simultaneously expedite the start of her independent career in nursing research on pain and sleep in AYA with SCD through expanding access to age-appropriate digital interventions for AYA with SCD. Study findings will support modification and further development of the digital MBI for pain and sleep through future R01 applications to conduct a large randomized controlled intervention trial among AYA with SCD.
