What Is Known?
- Adolescents with inflammatory bowel disease may not be fully prepared to transition to adult care.
- Some adolescents with inflammatory bowel disease are unfamiliar with their medications and their adverse effects.
- Adolescents with inflammatory bowel disease report higher levels of depression, lower quality of life, and lower social functioning.
What Is New?
- An electronic quiz game can identify gaps in inflammatory bowel disease knowledge at the point of care.
- An electronic quiz game may improve individualized inflammatory bowel disease education in adolescents.
- Electronic tools may be helpful in rapidly screening for emotional dysfunction in adolescents with inflammatory bowel disease.
Inflammatory bowel disease (IBD) is a chronic, autoimmune disease affecting both children and adults. Studies suggest that despite the long-term aspect of IBD, many patients do not have sufficient knowledge of their disease and management (1,2). Furthermore, studies have demonstrated that pediatric patients transitioning to adult care may not be fully prepared to self-manage their disease (3–5). This can affect adherence and increase morbidity and mortality.
A few IBD literacy quizzes exist but are not tailored for the clinical setting, nor do they include newer medical therapies (6–8). In addition, only 1 is validated for children. An interactive, electronic quiz game is ideal for children with IBD. It would evaluate gaps in knowledge, potentially enabling tailoring of education specific to the individual patient and identify common gaps in knowledge among patients.
Through a collaborative effort, we report our pilot study of an iPad-based game created to test IBD-specific knowledge in pediatric patients. Our aims were to identify gaps in pediatric health literacy in IBD and determine whether identification of patient-specific gaps in knowledge changes the content of the office visit.
IBD Question Development
The initial platform, named “Emma” was created by the Center for the Creation of Economic Wealth (CCEW) at the Oklahoma University (OU) in 2011. This platform was tested at the Oklahoma University Health Sciences Center (Site 1) in partnership between CCEW, an IBD physician, dietitian, psychologist, and nurses. Members of the team involved in Emma's development identified a goal of an iPad-based nutrition and disease management teaching game with basic storyline and game action. In addition, the psychology team provided psychosocial questions that could be utilized for patient discussion. (Appendix A, http://links.lww.com/MPG/A446; full set of questions in Appendix B, http://links.lww.com/MPG/A447). A database of 185 questions was created in the categories of “General IBD Knowledge” (focusing on concepts of adherence and stress) and “Nutrition.” The initial structure of Emma's gameplay was a brief storyline introduction by the character Emma, choice of terrain on which to “fly” her aircraft, and then 4 periods of flying, landing, and answering of IBD-specific knowledge questions. These questions were multiple-choice, with the answer provided. During each gameplay, 12 IBD-specific knowledge questions were pulled randomly from the database. At completion, the 4 psychosocial questions were administered (an overview of the Emma game can be viewed at http://links.lww.com/MPG/A448).
Further game and question development was conducted at the Mayo Clinic (Site 2) in 2013. Apple's iOS Developer Program was used to create the app for beta testing. Content experts were involved in creating version 2, including pediatric IBD physicians, nurses, pediatric dietitians, and a pediatric education coordinator. In version 2, the proportion of nutrition questions was significantly reduced based on patients’ feedback of difficulty and expert opinion on relevance to IBD. Additional questions were added to domains of “General Knowledge,” “Anatomy/Testing,” “Medications,” and “Nutrition,” resulting in a database of 48 IBD-related questions. As a pilot study, we limited identifiers to sex, type of IBD, and age group (10–14 vs 15–18 years), and whether they had prior surgery.
Each “gameplay” in version 2 again consisted of 12 IBD-specific questions, with the original 4 psychosocial questions. Questions were assigned a level of difficulty. Children 10 to 14 years of age started with “easy” questions, whereas those 15 to 18 years of age started with “difficult” questions. Subsequent question difficulty changed based on age group and correct answers. For example, a younger patient who correctly answered 3 “easy” questions would begin to get “difficult” questions. Conversely, an older patient who incorrectly answered 1 “difficult” question would subsequently receive an “easy” question. Question logic also included questions targeted toward patients with Crohn disease, surgical history, or on immunosuppression. Results of the IBD-specific questions and mental health could be reviewed directly on the iPad and/or emailed to medical staff to print.
Both versions were tested at the pediatric IBD clinics at each site. Established patients with IBD between 10 and 18 years of age were included. As a pilot, patient-specific information for analysis was limited to what was entered into the Emma app at the time of gameplay (younger vs older age, IBD subtype, medications, and history of surgery).
The project described here was conducted in collaboration with the Chronic Care Network (C3N) Project and the ImproveCareNow Network. The C3N Project is an NIH-funded transformative research project that used commons-based peer production to engage a wide array of patients, families, clinicians, and researchers in innovation and health care improvement (9). ImproveCareNow involves 69 pediatric care centers that are working together to improve care and outcomes for children with IBD through quality improvement, innovation, and research. This was conducted as a pilot educational tool within this collaboration, which was approved by the institutional review boards of both sites.
Four psychosocial functioning questions were included, scored using a 5-point Likert scale from 1 (indicating no difficulty) to 5 (indicating significant difficulty; Appendix A, http://links.lww.com/MPG/A446). This served several purposes. First, it served as a quick mental health screen to determine whether additional supports were needed at both sites. Second, investigators at the OU were interested in determining whether a small set of psychosocial questions could be used to accurately predict health-related quality of life (HRQOL) compared with a widely used HRQOL survey, the Impact-III (10). For the 4 questions added to the Emma game for psychosocial assessment, 1 question related to mood, 1 related to anxiety, 1 related to energy level, and 1 related to QOL during the school day because of disease activity (11).
Patients completed a feedback questionnaire built into “Emma,” including whether playing the game encouraged them to speak with their physician or read more information about their IBD, question difficulty, and game difficulty. In Emma v2, the IBD clinic staff at site 2 completed questions regarding impact on the flow of the office visit, whether teaching occurred as a result of playing Emma, and whether significant concerns of anxiety or depression were elicited. Qualitative comments were recorded by staff.
Descriptive statistics were used, including counts and percentages for discrete variables, and mean, median, and range for continuous variables. The χ2 and Fisher exact tests were used for analysis of association between all demographic variables including age group (older and younger), sex (boy and girl), disease type (Crohn disease and ulcerative colitis), and Emma version (1 and 2).
Sites 1 and 2 tested Emma v1 between February-August and May-August 2013, respectively. Emma v2 was tested from November 2013 to January 2014 and from September 2013 to January 2014, respectively. A total of 56 patients played Emma v1, whereas 60 patients played Emma v2. The proportion of younger patients, sex, IBD type, and medications were similar between the 2 groups. (Table 1).
Of 18 subjects who played both versions, 14 remained on the same medical regimen, whereas 4 were on new medications. Of these, 2 were started on a concomitant medication.
Among 56 patients who played Emma v1, 66.7% of all questions were answered correctly. Among the domains, 73.5% in General Knowledge and 59.8% in Nutrition were answered correctly.
Among 60 patients who played Emma v2, 73.1% of all questions were answered correctly. Among the domains, 76.1% of General IBD, 61.7% of Anatomy/Testing, 78.1% of Medication, and 81.9% of Nutrition questions were answered correctly. Because of incorporation of question logic, analysis of total scores or scores by domains is not feasible. We analyzed 10 individual questions, however, asked with high frequency (Table 2). Patients were able to recognize signs of IBD (88%), recognize potential causes of diarrhea in addition to IBD (79.4%), define lactose intolerance (95.8%), and understand that eating a low-residue diet is temporary (81.8%). Fewer patients, however, were aware of serological testing used for disease monitoring (68%), that magnetic resonance enterography did not involve radiation (22.9%), or could identify the live vaccine to avoid when immunosuppressed (66.7%). IBD type, age group, and sex were not associated with performance on these questions, except in recognizing that IBD and irritable bowel syndrome were different conditions. Patients with Crohn disease were more likely to answer correctly than those with ulcerative colitis (95.2% vs 53.8%, P = 0.007).
Overall, 116 patients examined through the study completed Emma's psychosocial questions during IBD clinic visits (Table 2). Each question was answered by a Likert scale rating of 1 to 5, with a score of “1” indicating good functioning or no difficulties in the past 2 weeks. Although questions related to disease knowledge, medication, and dietary issues changed considerably between Emma versions 1 and 2, the psychosocial questions did not change. This allowed the authors the ability to compare psychosocial score means for each of the 4 questions to check for differences between groups based on the time and version they took. An additional 18 participants played Emma at both Time 1 and Time 2 but were excluded from the comparison study and analyzed separately.
Interestingly, when compared with patients who played Emma v2, patients who played Emma v1 reported better functioning when asked about sadness (1.16 vs 1.93, P = 0.001), stress and anxiety (1.4 vs 2.40, P < 0.001), and IBD-related quality of life (QOL) (1.21 vs 1.67, P < 0.03). Because this could be related to seasonal differences or the academic calendar, we examined the patients who played both versions and did not see the same trend. Patient responses to the psychosocial questions were examined together in relation to other age group, sex, IBD type, history of surgery, and medications prescribed. When broken down by patient characteristics, it was found that patients with Crohn disease were more likely to report higher stress levels compared with patients with UC (2.16 vs 1.53, P < 0.02); older patients were more likely to report lower energy levels (2.05 vs 1.56, P < 0.05), and the small group of postsurgical patients reported lower QOL (2.63 vs 1.48, P < 0.03) (Table 3).
The results of Emma were able to be given during check-in with psychology service providers at site 1, allowing providers to discuss responses to functioning questions directly with 12 patients during the time data were collected. Although most psychosocial scores mirrored the good overall functioning of the patients, and not all patients taking Emma received direct consultation with psychology providers; those who spoke to psychology providers and had reported functioning difficulty received brief support. Between the 2 sites, 4 patients were referred for mental health consultations.
Patients gave feedback before medical staff interactions. When asked, “Has playing helped you think of questions to ask your doctor,” 53 of the 58 (94.8%) responded “neutral,” whereas 2 (3.4%) responded “no” and 1 (1.7%) responded “yes.” When asked how to improve the game, 24.1% suggested changes in instructions, 53.4% suggested game improvements, and 22.4% suggested changes in question difficulty. In open-ended feedback, older patients felt the gameplay was “young,” whereas younger patients tended to enjoy the game. Adolescents who discussed Emma as a transition tool tended to agree with its usefulness for education goals.
Medical staff questionnaires were completed at site 2. Directed teaching occurred 76% of the time. Gameplay uniformly took <10 minutes, minimizing the impact on office flow. Disruptions to the office flow occurred if patients were placed into a clinic room late and during technical issues (eg, difficulty e-mailing).
To our knowledge, this is the first electronic quiz game designed to test pediatric knowledge of IBD. The advantages of the format included an ability to tailor some questions to the type of IBD and history of surgery (to incorporate questions on ostomies), and focus on immunosuppression for patients taking immunosuppression. This increases personal relevance, which is associated with maintaining attention and may be more likely to facilitate behavior change (12). We feel that limiting the Emma game to 12 IBD-specific questions at a time maximized patient attention and based on staff feedback minimally disrupted the office flow.
Prior studies focused on transitioning in IBD have demonstrated that older teenagers with IBD may have difficulty recollecting their medications and are not confident in knowing the adverse effects of medications (1–5). This likely reflects more engagement by the parent than the pediatric patient at clinic visits. Emma focuses on patient health literacy, as opposed to parent health literacy. During multiple observations by medical staff, parents would occasionally help with reading a sentence but did not provide answers. This emphasized the patient's role at the clinic visit.
Several IBD-specific health literacy questions have been validated (6–8). The CCKNOW, however, includes questions on fertility, pregnancy, and colon cancer written for an older patient. The IBD-KID was recently published and is written at a sixth grade reading level. Our questions included concepts that, however, have become relevant during the past decade, including questions regarding biologics as immunosuppression, vaccines, Clostridium difficile infections, and radiation exposure. The longer length of the questionnaires (20–30 questions) precludes incorporation into an average clinical visit with subsequent directed teaching. As an electronic game, Emma is designed to give the patient instant feedback regarding their performance and the summary feedback to medical staff. This aids in directed teaching and improves office flow (eg, staff do not need to “grade” the quizzes). Several video games have been able to demonstrate short-term improved behavioral outcomes.
Lieberman (13) demonstrated improved asthma education and improved patient self-efficacy after playing “Bronchiesaurus” for 40 minutes. Reports of self-efficacy were sustained for 1 month. Re-Mission was designed for pediatric oncology patients to play at home. It included teaching of medications, adverse effects, positive self-care behaviors, and stress management. During a 3-month period, the intervention group demonstrated better adherence and cancer-related knowledge, and also reported higher self-efficacy. Reported QOL and stress were not different, however (14).
Several studies have reported higher levels of depression, lower QOL, and lower social functioning in patients with IBD (15). Overall, our patients seemed to have good mental health functioning. We observed higher scores related to stress, however, in patients with CD, whereas older patients reported lower energy levels. A consideration must be made that both population size and differences between patients at 2 sites and at 2 distinct periods of time limits the generalizability of these findings because characteristics that were not measured may have had an impact on reported psychosocial scores.
There are limited studies comparing differences by IBD subtype. Wood et al (16) observed patients with CD tended to internalize symptoms, irrespective of disease activity. Szigethy et al (17) reported higher depressive scores in older adolescents, independent of duration of disease. As we confined descriptive data to what was entered into the Emma game, we did not look at relation to disease duration or disease activity. Prior studies, however, have demonstrated conflicting results in looking at emotional difficulties and disease activity (18). This may be related to differences in question construct because patients may express different subtypes of depression (19). Our questions as a whole were not validated as a specific depression or anxiety screen but highlight aspects of emotional difficulty that could be quickly surveyed in a clinical setting. More studies are needed to look for demographic correlation and aspects of emotional health.
When asked, “Has playing helped you think of questions to ask your doctor,” many patients responded “neutral.” This question was asked immediately after playing Emma, instead of after medical staff interaction. At site 2, the psychologist and dietitian were able to review the results and guide the interactions for education, discussion of self-management behaviors, mood, and social functioning. Recommendations on subsequent medical care were shared with the larger multidisciplinary team. At site 2, directed teaching was conducted at 76% of encounters. Although a patient may not have a specific IBD-related question to ask medical staff, our experience suggested Emma provided a structure for an individualized discussion.
There are several limitations to this study. We conducted this as a pilot feasibility study. As such, we did not collect data on the duration of disease, nor disease activity to correlate this with health literacy or psychosocial functioning. It was not designed to validate questions. Because each patient was administered a subset of IBD-specific questions with each gameplay, we could not subanalyze across all questions by demographics or IBD type.
To further enhance the Emma iPad game, we have built in separate screens for office staff and the patient to enter data on IBD type, disease location, and medications. This will verify the patient's basic knowledge in these areas. We would like to refine the question database and build the capability to repeat questions previously answered incorrectly, as a measure of increased learning. We would like to incorporate more patient feedback in designing the gameplay, particularly with older patients. The gameplay may include tying improved performance on questions to rewards in the game, to allowing the patient to choose questions by category, creating “levels” to master, and showing the previous “high score” and/or high scores of other patients. A desire to improve in the game may be linked to the desire to engage the medical staff to learn more about their IBD.
Lastly, prospective measurements of patient autonomy or engagement when playing Emma would be ideal. We did not concomitantly assess measures of autonomy (eg, self-report by a transition checklist), which might be useful to look for correlation with IBD literacy.
In summary, we have described the pilot phase of an electronic based tool to assess IBD-related knowledge and screen for emotional dysfunction in the clinic setting. We have demonstrated that this tool can be used to gather this information and facilitate effective utilization of it in real time during the clinic visit. Consequently, we expect this tool has the potential to both increase patient engagement during the clinic visit and become a useful tool in the transitioning process for adolescents with IBD.
The authors thank Ryan Blucker, PhD, and Rebecca Suddock, RD, for question and game development, Julie Buchholtz, RD, for question development, Jessica Decker, RN, and Sara Gasper, RN, for clinical teaching and feedback, Robert Free and Ryan Johnson for game development, Molly McKean for game oversight, Molly McMahon for game development and feedback, and Laura Swenson for feedback.