Using Patient-Centered Guidelines in a Technology Platform to Improve Health Care in Adults With Sickle Cell Disease

Sickle cell disease (SCD) is an inherited blood disorder that affects over 100,000 Americans,
an underserved population with low life expectancy and risk for significant and
life-threatening medical complications (e.g., stroke). Adults with SCD are overwhelmingly
members of socially disadvantaged groups, increasing their risk for disparities in care.
Annual health expenditure for individuals with SCD in the United States is about $1.5
billion, primarily from multiple emergency room visits (230,000 visits/year) for management
of acute complications. Use of disease-specific knowledge has emerged as a powerful tool to
decrease health care utilization. Significant evidence has described how to increase
disease-specific knowledge using educational materials, including online educational programs
in individuals managing chronic diseases, including SCD. Patient knowledge and use of
disease-specific information like evidence-based clinical guidelines has the potential to
decrease health care utilization. In 2014, the National Heart, Lung, and Blood Institute
(NHLBI) published guidelines for evidence-based management of SCD for health care providers.
However, to date, no national strategy has been developed to make these guidelines
patient-centered, accessible, and actionable for adults with SCD. Federal Meaningful Use
regulations have recommended using health-related technologies to improve patient access to
their health information to promote patient engagement. Yet, many adults with SCD are not yet
fully engaged in use of health technologies because they are unsure of the best format (e.g.,
mobile or web-based), leading to a health care technology gap. Mobile health applications
(apps) that include patient-centered care guidelines could engage and activate this
population given the high use of mobile technologies, potentially closing this health
technology gap and improving health outcomes.

Evaluate the feasibility and acceptability of the refined iManage in a pilot study with
adults with SCD. The investigators will recruit 50 adults from the population of 250 adults
with SCD at the Vanderbilt Meharry Sickle Cell Disease Center of Excellence for a 6-month
pilot study to evaluate usability, acceptance, and usage. At the end of the study, the
investigators will conduct interviews with a subset of participants to gain an in-depth
understanding of usage patterns and how to sustain engagement to promote ongoing app use.

Evaluate the efficacy of the refined iManage app on SCD-specific knowledge. The investigators
will test the hypothesis that the refined iManage will increase SCD-specific knowledge by
measuring SCD-specific knowledge at the start and end of the 6-month pilot study. the
investigators will conduct exploratory analyses of secondary outcomes including patient
activation, adherence to guidelines, missed days of school/work, and self-efficacy.

Inclusion Criteria:

- receives care at the community health clinic,

- diagnosis of SCD (Hgb SS, SC, Sβ-thal),

- ability to speak and understand written English

- has access to a smartphone or computer

- between 18-70 years.

Exclusion Criteria:

- lack of access to a smartphone or computer

- inability to speak and understand written English