Introduction 

The highest rates of morbidity and mortality among adolescents and young adults (AYA) living with sickle cell disease (SCD) occur during the transition from pediatric to adult medical care. While health inequities are numerous and multisystemic for this population, it is difficult to target modifiable risk factors without valid measurement of patient readiness to transition care. Transition readiness refers to indicators that patients and those in their support system can begin, continue, and finish through the event of transferring to an adult provider. Following rigorous guidelines for developing patient-reported outcomes, we aim to conduct cognitive interviews with AYA to elicit their feedback on the Transition Readiness Inventory for SCD (TRI-SCD).

Methods 

AYA with SCD (ages 16-29) at the Children's Hospital of Philadelphia are completing cognitive interviews on the TRI-SCD item pool (80 total items). Items capture several domains of transition readiness, guided by the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E), including knowledge and health literacy, skills and self-efficacy, developmental maturity, beliefs and expectations, goals and motivations, relationships and communication, and emotion and psychosocial functioning. 

After completing the total item pool, cognitive interviews (on 20 items/participant) are conducted to understand participants’ interpretation of items and response selection. Standard interview probes include but are not limited to, “In your own words, what is this item asking?” Interviews take about 35 minutes and are conducted at CHOP or virtually using Microsoft Teams.  

Results 

Thus far, 4 cognitive interviews of the same 20 items have been conducted (4 African-Americans, ages 21 to 26, 2 female and 2 male). AYA reported similar feedback for items about knowledge, skills, maturity, and goals. For example, when reading the knowledge item, “I know the names of the medications I take for SCD,” all participants understood "medications” as the daily pills they took for their SCD. On the contrary, items targeting beliefs, relationships, and emotional components elicited varied participant experiences that guided their response choice. For example, “I am comfortable talking to the emergency room team when I am in pain,” an item assessing relationships and communication, obtained responses with varied emphasis. One participant agreed “a lot” with the statement and expressed that her comfort depends on how much she trusts that team, thereby viewing the item from a relationship lens. However, another participant also agreed “a lot” with the statement but instead explained his response from a physical capability lens. He often has so much pain that it is difficult to speak, so his communication is dependent on how much pain he is experiencing and not on his relationship with the care team. 

Discussion 

Cognitive interviews will continue to refine the item pool so that it accurately assesses transition readiness in this population. Patient perspectives are extremely important in measurement development for patient-reported outcomes, especially for these social-ecological factors that can vary based on one’s environment and past experiences. Creating a valid measure of transition readiness could mitigate health inequity and lead to more favorable outcomes for AYA with SCD.