Pediatric patients with sickle cell disease (SCD) face racial bias and healthcare stigma compounded by limited age-appropriate health education. Due in part to a lack of dedicated SCD education, providers can hold misconceptions about SCD and biases against patients. Gamification improves disease education and mitigates stigma in various clinical settings. In this study, we created the GRAPES tool (Game to Raise Awareness for Patient/Provider/Public Education of SCD, www.tinyurl.com/GRAPESgame), a free, online, trivia-based educational game. We hypothesized that utilization of the GRAPES tool will improve patient and provider SCD knowledge and mitigate SCD stigma among providers.
The GRAPES tool is a single-player, interactive game developed using Figma, a collaborative user-interface design software. Multiple-choice questions are structured into five educational modules (science, treatment, epidemiology, myths, and symptoms) with customizable red blood cell characters and hand-drawn screens to promote user-friendliness. Hyperlinked resources and an answer booklet provide further education. To promote health literacy for users of all ages, especially children, content is written at a fifth-grade Lexile level.
The GRAPES tool was tested in two cohorts at St. Louis Children's Hospital: 1) pediatric patients 10 years of age or older with any genotype of SCD and 2) registered nurses at any career stage who care for patients with SCD. Both cohorts completed a 20-question, multiple-choice knowledge questionnaire pre- and post-gameplay to assess knowledge gains. Provider healthcare experiences were assessed pre- and post-gameplay through the 17-item short-form General Perceptions About Sickle Cell Patients Scale (GPASPS, Haywood et al., 2010). Post-gameplay, both cohorts completed a satisfaction scale and provided written feedback for game improvement. Non-parametric testing was used to compare paired-sample pre- and post-assessments.
Of the 29 pediatric hematology-oncology nurses approached, 25 nurses (18 inpatient, 7 outpatient) were recruited. 49 patients with SCD were approached, and 25 patients (20 HbSS, 2 HbSβ 0, 1 HbSC, 1 HbSβ +, 1 HPHF) consented (Table 1). Four of the patients with SCD had prior curative hematopoietic stem cell transplants. The providers worked in the nursing field for a median of 6.0 [IQR 3.0-9.0] years.
Recruited participants completed all study activities, including pre- and post-gameplay assessments. Patients with SCD completed the game with a median time of 17.0 [IQR 11.5-20.5] minutes. With data from 12 providers, the median gameplay time was 12.5 [IQR 10.0-16.5] minutes. All participants (p < 0.001), including within the provider (p < 0.001) and patient (p = 0.019) cohorts, showed increase in knowledge after gameplay (Fig. 1).
Both providers and patients indicated the game was of high quality and relevance (Table 2). Patients wrote: "It was helpful to know about my sickness. The treatment part was helpful," and, "The terms were helpful because I didn't know them before." One provider wrote, "I liked how there were helpful links that I could click on for more info." Some suggestions for improvement included an introductory slide about SCD and a back button.
Provider negative attitudes (Q1-6, Fig. 2) were reduced (p = 0.0072) post-gameplay, but positive attitudes did not significantly change (Q7-10, Fig. 2). Providers also showed a significant decrease (p=0.0014) in the belief that patients changing their behavior around providers indicates inappropriate drug-seeking behavior (Fig. 3).
Patients and providers demonstrated significant improvement in SCD knowledge after playing GRAPES. Providers also held reduced negative attitudes towards patients with SCD post-gameplay. In the context of positive feedback from both cohorts, this study demonstrates the feasibility and acceptability of the GRAPES tool as a potential digital, behavioral intervention to decrease stigma against SCD patients and provide engaging educational materials for patients and their providers in different clinical settings. Our GRAPES tool won first prize in the 2021 NHLBI Hope for SCD Challenge (www.tinyurl.com/NIHgrapes). We are excited to continue evaluating the benefits of the GRAPES tool in a larger multi-institutional study and collaborate with the NHLBI for future dissemination among patients, families, and providers.
Badawy: Vertex Pharmaceuticals Inc: Consultancy; Bluebird Bio Inc: Consultancy; Sanofi Genzyme: Consultancy. Fields: Global Blood Therapeutics: Consultancy; Proclara Biosciences: Current equity holder in publicly-traded company.