Congenital Heart Defect, Congenital Heart Disease in Adolescence, Patient Centered Care, Serious Games, Transition-age Youth, Transition to Adult Care
Conditions
Brief summary
This study involves testing a new video game designed to support adolescents with congenital heart disease (CHD) in preparing to manage their health independently. The game aims to teach essential skills such as communicating with healthcare providers, understanding medical information, and managing appointments and medications. This small pilot study will evaluate the game's usability, acceptability, and its impact on participants' confidence and preparedness for managing their heart care. Feedback will be collected from adolescent participants, their parents, and healthcare providers, and the study will examine how the game influences communication during clinical visits.
Interventions
BEHAVIORALSerious game for transition readiness
The serious game is an interactive narrative fiction game in which players guide a character through a hospital setting, making choices that simulate real-life healthcare scenarios. The game is designed to improve skills such as communication with healthcare providers, understanding medical information, and managing appointments and medications. No drugs or medical devices are used in this intervention.
Sponsors
University of Utah
American Heart Association
National Center for Advancing Translational Sciences (NCATS)
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
12 Years to No maximum
Healthy volunteers
No
Inclusion criteria
\- Patient with congenital heart disease, their parent, and their clinician
Exclusion criteria
-Significant visual or cognitive impairment that would impede their ability to play the game and/or complete the study.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of game logins | 1 month | Metadata metrics from players interaction with the game will be collected, including the number of game logins. The higher the number the more engagement with the game. |
| Length of time spent on game | 1 month | Metadata metrics from players interaction with the game will be collected, including the amount of time spent (i.e., minutes) on the game. The greater the amount of time the more engagement with the game. |
| Game sections completed | 1 month | Metadata metrics from players interaction with the game will be collected including the number of game sections that are completed. The higher the number indicates more engagement with the game. |
| Recruitment of participants in the study | 1-month | A percentage will be calculated from the number of participants approached and number of participants who enrolled. Sufficient recruitment is equal to or greater than 60%. |
| Retention of participants | 1.5 month | Retention of participants will be assessed by calculating a percentage from the number who enrolled and number who completed the study. Sufficient retention will be greater than or equal to 60%. |
| Acceptability | 1-month | After completing the intervention, participants will be asked to complete questionnaires about their satisfaction and usability of the game (e.g., system usability scale (SUS). On the SUS, responses are from 1 to 5 for each item and greater scores indicate higher acceptability. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Appointment Worry and Preparedness | Baseline and Post-intervention survey (given or sent within 1 week post-clinic visit) | Five item measure developed by study team that asks participants to rate how worried and prepared they feel for their appointment |
| Transition Readiness Questionnaire (TRAQ) | Baseline and Post-intervention survey (given or sent within 1 week post-clinic visit) | TRAQ is a validated scale indicating baseline transition readiness skills across: medication management, tracking health concerns, and communication Higher scores indicate better readiness to independently manage care. |
| CHD Knowledge Scale (Transition Readiness) | Baseline and Post-intervention survey (given or sent within 1 week post-clinic visit) | This validated scale evaluates transition readiness, including perceived knowledge of adolescents with CHD. Self reported knowledge questions are domain specific to CHD. |
Countries
United States
Outcome results
None listed