Abstract
Background: Sickle cell disease (SCD) is an inherited blood disorder causing acute complications and chronic progressive end organ damage. SCD is associated with significant morbidity, early mortality, impaired health-related quality of life, and increased acute health care utilization. Hydroxyurea is a US Food and Drug Administration-approved medication that reduces disease complications, acute health care utilization, and costs. However, adherence to hydroxyurea is suboptimal. Mobile health (mHealth) interventions have the potential to improve hydroxyurea adherence, but few examples exist that are specific to the SCD population. Objective: This study aimed to design a mHealth intervention for individuals with SCD to improve adherence to hydroxyurea, using a user-centered design that was informed by specific barriers to hydroxyurea adherence and utilization in this population. Methods: This study consisted of 4 phases. In phase 1, individuals with SCD and health care providers participated in an optimization digital workshop. In phase 2, patients completed surveys pertaining to their interest in mHealth use, barriers and facilitators to hydroxyurea use, and health literacy. Phases 3 and 4 involved semistructured interviews and focus groups, respectively, and used the Health Belief Model (HBM) as the framework to investigate drivers of poor hydroxyurea adherence and to inform the development of an app prototype. In addition, in phase 4, we have incorporated the patients' feedback on the preliminary app prototype and its features. Results: Barriers to hydroxyurea adherence were consistent with the literature and included forgetfulness and several specific thoughts and emotions associated with hydroxyurea use (eg, fear of side effects, depression, stigma, and hopelessness). In addition, more than half of the participants reported potentially low health literacy. Preferred patient app features included 7 key components, namely (1) medication reminders and tracker, (2) disease education, (3) communication, (4) personalization, (5) motivation, (6) support during pain episodes, and (7) social support. Utilizing a user-centered design approach, data obtained from patients and providers were translated into features within the app, mapping to components of the HBM and the specific drivers of hydroxyurea adherence and matching the literacy level of the population, resulting in the development of a novel mobile app called InCharge Health. Conclusions: The InCharge Health app is an mHealth intervention developed with substantial input from users and by mapping the HBM as the framework that guided the choice for its components. InCharge Health is a customized product for the SCD population aimed at optimizing medication adherence, with the end goal of improving quality of life and health outcomes among patients with SCD. The efficacy and implementation of the InCharge Health app as an mHealth intervention to promote hydroxyurea adherence will be tested in a future stepped-wedge multicenter trial for adolescents and adults with SCD.
Original language | English (US) |
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Article number | e14884 |
Journal | JMIR mHealth and uHealth |
Volume | 8 |
Issue number | 5 |
DOIs | |
State | Published - May 1 2020 |
Funding
This project was supported by grant number 1U01HL133996-01 (principal investigator [PI]: JH) from the NIH, NHLBI; K12HS023011 (PI: SB) from the Agency for Healthcare Research and Quality (AHRQ); and K01 HL125495 (PI: JP) from the NIH, NHLBI. The content is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ or NIH/NHLBI. The authors would like to thank Yvonne Carroll, JD, RN for helpful suggestions during development of InCharge Health, Mr Michael A Jackson (Sickle Cell Foundation of Tennessee) for contributing with app content selection, Jeff Frey, PhD, MBA, BS, for his assistance in organizing and leading the optimization digital workshop, and Agency 39A, LLC [113] for developing the InCharge Health app prototype.
Keywords
- Hydroxycarbamide
- Hydroxyurea
- Internet
- Medication adherence
- Mobile health
- Self-management
- Sickle cell anemia
ASJC Scopus subject areas
- Health Informatics