Charles Jonassaint, Ph.D. - US grants

PROJECT ABSTRACT The overarching goal of this candidate's program of research is to improve behavioral and physical health and reduce health disparities by using multimedia technology to deliver evidence-based interventions to underserved populations. The focus is sickle cell disease (SCD), a condition that disproportionately affects those of African descent. Many people living with SCD suffer from daily chronic pain as well as recurrent acute pain episodes that require medical attention. Opioid medication is the primary treatment for pain in SCD, despite its limited effectiveness and negative side-effects. The proposed K23 attempts to address the need for an alternative, non-pharmacological pain treatment in SCD. Computerized cognitive behavioral therapy (cCBT) has been found effective for reducing chronic pain and may be a low cost, easily accessible and scalable pain treatment in SCD. The candidate's K12 project tested a cCBT program for anxiety and depression; preliminary results suggest that patients liked using the program, but found that much of its content did not relate to their lives. To address this limitation, the proposed K23 project will adapt an existing cCBT program for pain management to create ReThink Pain SCD, a culturally-tailored, mobile-phone delivered behavioral intervention designed specifically to help African American patients self-manage chronic sickle cell pain. Aim 1: Modify and tailor the generic cCBT pain program, using qualitative research methods to understand the needs and barriers to pain management in patients with SCD, as well as the opportunities to engage this population using multimedia. These data will inform the development of the features and content of ReThink Pain SCD. Aim 2: Conduct a pilot pragmatic clinical trial to test the feasibility and acceptability of implementing this pain intervention into routine SCD care. Forty patients with SCD will be randomized to either receive 8 sessions of the cCBT program or 8 online education modules on a smartphone. Primary outcomes of the trial include feasibility (recruitment, retention, provider and patient feedback) and acceptability (sessions completed) of the ReThink Pain SCD program. In order to achieve the goals of this research plan and transition to independence, the candidate requires further training in user-centered design, implementation science, design and conduct of pragmatic clinical trials, and team management and leadership. This proposal includes an exceptional team of mentors and consultants. Primary mentor Dr. Bruce Rollman is founding Director of the Center for Behavioral Health and Smart Technology. Co-mentor Dr. Robert Noll is a clinical psychologist with expertise in behavioral intervention trials. Co-mentor Dr. Laura De Castro is a nationally recognized trialist and expert in sickle cell disease. This training and research plan will form the basis for a future multicenter clinical trial testing the efficacy of ReThink Pain SCD for improving pain outcomes among adults with SCD, to be proposed in an R01 grant application before the end of the K23 award.

PROJECT ABSTRACT Pain is the number one reason adults with sickle cell disease (SCD) access the healthcare system. To adequately treat pain first requires accurate assessment, however, there are no pain measures that effectively capture the multidimensional phenomenon of SCD pain. One-dimensional measures of pain, such as the numerical 0-10 scale, have limited utility and are ineffective for guiding treatment. Multi-dimensional pain tools are long and complex, making them difficult for patients to use. There have been no attempts to create a multi- dimensional measure to assess and classify pain in SCD. The long-term goal of this project is to develop a comprehensive, patient-centered, pain assessment tool, that will improve patient-provider communication, pain diagnosis, and treatment of pain. The proposed R03 tests a novel electronic pain assessment tool called Painimation, that allows patients to use animations and graphical images to communicate their pain. Our primary objective will be to determine if Painimation is acceptable to patients and can be used as a valid SCD pain assessment tool. We hypothesize that Painimation will be more usable and acceptable to patients than standard scales. In Aim 1, we will determine the usability and acceptability of Painimation for communicating and assessing pain among adults with SCD. We will test Painimation alongside other validated pain scales (the 0-10 visual analog scale, PainDETECT, and the McGill Pain Questionnaire) among 70 adults with SCD in a cross-sectional survey study. For each measure, we will evaluate usability, patient satisfaction, and perceived usefulness for communicating pain to providers. In Aim 2, we will determine whether pain assessment using Painimation is associated with patients' quality of life and clinical outcomes. We will test the association of Painimation with patient-reported quality of life (ASCQ-Me) and objective health outcomes (i.e. organ damage, number of acute care visits for pain) to determine if Painimation is a viable outcome measure in clinical trials testing pain interventions. Finally, in an exploratory Aim 3, we will test whether Painimation can differentiate SCD pain types (e.g. neuropathic vs nociceptive). The proposed research is significant because it will lead to the creation of a brief, accurate, and user-centered pain assessment tool for use in SCD. Our team includes experts in IT, UX design, pain, and measurement development. Expanding Painimation, a novel, technology- based pain assessment tool, for use in SCD directly relates to and results from my K23 project and will advance my potential as an independent investigator to conduct large-scale (R01) studies examining the impact of pain interventions on health outcomes. Long-term, improved outcomes measurement will increase our ability to detect the effects of our mobile technology-delivered behavioral interventions.

ABSTRACT African Americans living with chronic health conditions are more likely to experience depression and other mental health disorders than their healthy counterparts, and are more likely to experience severe depression than whites, but less likely to be diagnosed or receive treatment. One especially vulnerable group is patients with sickle cell disease (SCD), a genetic blood disorder that primarily affects people of African descent, many of whom live in disadvantaged circumstances and are cared for in under-resourced settings. SCD causes severe acute and chronic pain, end-organ damage, and early mortality. Patients transitioning from adolescence to adulthood (ages 16-30) are at high risk for mental health disorders and suicide. Using mobile technology, we can provide high-quality, evidence-based behavioral mental health treatment that reaches patients in different settings. Digital cognitive behavioral therapy (CBT) is effective for treating depression and anxiety and can be brought to scale at low cost. Despite the promise of digital CBT, there are barriers to its widespread use, particularly in low-resource settings serving minorities. Qualitative data show that cultural factors?lack of relatability, representation, and perceived stigma regarding mental health treatment?limit engagement with digital CBT programs. Population- and setting-specific adaptations to interventions can lead to their successful implementation and wider use. We will work with a digital CBT program to decrease stigma and make it more relatable and relevant to young adults with SCD, by devising changes to advertising and promotion, and tailoring communication with an integrated health coach, Aim 1: Use implementation science (ImS) and human-centered design methods to define the barriers to delivering routine mental health screening and digital CBT to adolescents and young adults with SCD. Aim 2: Rapidly iterate, test, and evaluate adaptations to the implementation strategy for a coach-enhanced digital mental health service. Aim 3: Demonstrate that a population-specific implementation strategy improves engagement with a digital CBT-based mental health service. We will capitalize on our mobile technology tools, interdisciplinary expertise, and community-based partnerships to investigate the implementation of digital CBT into low-resource clinics and community-based organizations serving adolescents and adults with sickle cell disease. This study will generate the necessary data and infrastructure to conduct a large scale, R01-funded, multi-site pragmatic trial to determine how digital CBT can be used as an effective, low-cost, and scalable mental health treatment for adolescents and young adults with SCD, and that will be generalizable to other underserved, depressed populations with chronic pain syndromes. 1