Abstract
Background: Patients with sickle cell disease (SCD) endure healthcare biases that are partially due to a lack of disease-specific education among healthcare providers. Furthermore, there is a paucity of age-appropriate health education materials for patients with SCD. To address this gap, we created the GRAPES tool (Game to Raise Awareness for Patient/Provider/Public Education of SCD; www.tinyurl.com/GRAPESgame) and hypothesized that utilization of the GRAPES tool will improve patient and provider SCD knowledge and mitigate healthcare bias. Procedure: The GRAPES tool is an online, single-player trivia game. A feasibility study was conducted in pediatric patients with SCD at age 10 years or older and registered nurses. All participants were assessed for change in SCD-relevant knowledge and satisfaction post-gameplay. Providers were assessed for change in attitudes toward patients with SCD post-gameplay. Results: Twenty-five patients and 25 providers were enrolled. All participants (P < 0.001), and specifically within the patient (P = 0.019) and provider (P < 0.001) cohorts, showed increased SCD knowledge post-gameplay. Both patients and providers reported high satisfaction with GRAPES. Provider negative attitudes were reduced (P = 0.007) post-gameplay without change in positive attitudes (P = 0.959). Providers demonstrated post-gameplay reduced (P = 0.001) belief that patients’ changing behavior around providers indicates inappropriate drug-seeking behavior. Conclusions: This study demonstrates the feasibility and acceptability of the GRAPES tool as a potential digital, behavioral intervention to provide educational materials for patients and their providers in different clinical settings, improve knowledge about SCD, and decrease stigma against patients with SCD in the healthcare setting.
Original language | English (US) |
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Article number | e29717 |
Journal | Pediatric Blood and Cancer |
Volume | 69 |
Issue number | 7 |
DOIs | |
State | Published - Jul 2022 |
Funding
MEF declares equity ownership in Proclara Biosciences, a biopharmaceutical company developing therapies for Alzheimer's Disease. MEF received one‐time compensation for scientific advisory board participation with Bluebird Bio, who is developing gene therapy trials for sickle cell disease. MEF works as a consultant for Global Blood Therapeutics, a company manufacturing Oxbryta for sickle cell disease. SMB has received consultancy fees from Bluebird Bio, Vertex Pharmaceuticals, Inc., and Sanofi Genzyme; advisory board fees from Chiesi, Global Blood Therapeutics, Inc. (GBT), and Forma Therapeutics; and research funding from Pfizer. We would like to thank and acknowledge Rosemary Britts from the Sickle Cell Disease Association of St. Louis for feedback on game development. The GRAPES game interface was developed as a first prize submission for the 2021 NHLBI Hope for SCD Challenge (www.tinyurl.com/NIHgrapes).
Keywords
- Education
- healthcare bias
- sickle cell disease
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Hematology
- Oncology