Bulgin, Tanabe Submit Research Proposal

Kudos to Dominique Bulgin, PhD'19 and consulting associate, her mentor Paula Tanabe, Laurel Chadwick Professor of Nursing, and her entire team for the submission of Bulgin's REACH Equity Research Scholars Development proposal “Piloting Telehealth Personalized Health Planning in Shared Medical Appointments for Sickle Cell Disease.” This proposal requests funding for a one-year period starting July 2020.

Sickle cell disease (SCD) is a genetically inherited disorder of the hemoglobin that is associated with a severely shortened lifespan and many serious complications requiring complex self-management strategies. Due to the complexity of SCD, conscientious self-management is required to improve quality of life, morbidity and mortality, and cost of care. Application of a telehealth Personalized Health Planning in Shared Medical Appointments (PHP-SMA) program could help improve SCD self-management.

Personalized Health Planning (PHP) is a model of care that emphasizes patient-centeredness, prevention and patient engagement. SMAs are an alternative to traditional one-on-one patient visits that can improve patient engagement, health self-management, adherence and outcomes. During SMAs, clinicians and health coaches see a group of patients (six-12 at each session) together in a longitudinal series of medical visits to provide comprehensive care for a chronic condition. There are limitations in the current in-person model of the PHP-SMA, including patients’ difficulty attending the sessions due to transportation issues and family/work commitments. The COVID-19 pandemic has placed additional limitations on access to care for individuals with chronic illnesses that have led to unprecedented expansions of telehealth.

The proposed study will pilot a telehealth personalized health planning in shared medical appointments program for adults with SCD. The specific aims are to:

1. Adapt the PHP-SMA curriculum for SCD

2. Pilot test a telehealth SCD PHP-SMA for feasibility and acceptability

Aim 2 will assess the:

1. Number of participants recruited vs. refused to participate in the pilot

2. Attendance and retention rates of the telehealth PHP-SMA

3. Acceptability of the telehealth PHP-SMA as measured by the participants' ratings of: 

   • The usefulness of the PHP-SMA

   • Whether or not they would recommend PHP-SMA to another patient with SCD

   • Extent to which the PHP-SMA changed their engagement in care [Patient Activation Measure and Sickle Cell Self-Efficacy Scale].

Finally, focus groups and individual interviews will be conducted with participants and stakeholders (health coaches and providers) to obtain feedback on implementation of the telehealth SCD PHP-SMA pilot. The synergy of these two evidenced-based interventions for chronic disease self-management could be ideal for individuals with SCD. Future studies will assess the impact of the PHP-SMA program on health outcomes, health care utilization and patient reported outcomes.