Date Presented 04/22/2023

In this study, we demonstrate the feasibility and acceptability of a novel metacognitive strategy training intervention for adolescents and young adults with sickle cell disease.

Primary Author and Speaker: Grace Hurley

Contributing Authors: Grace Hurley, Taniya Varughese, Elizabeth Skidmore, Odaro Adu, Abigail Picinich, Nai Qashou, Elizabeth Taaffe, Allison King

Adolescents and young adults (AYA) with sickle cell disease (SCD) display significantly lower executive functioning compared to healthy peers. We conducted a single-arm pilot intervention study to assess the feasibility and acceptability of strategy training (Skidmore, 2017) for AYA with SCD. AYA with SCD age 16-25 years without severe cognitive deficits or acute mental health concerns were recruited through SCD clinics at one academic health center. Participants received 10-14 strategy training sessions with a trained facilitator and completed post-session surveys. We adapted strategy training to focus on participant-selected community IADLs, employment, social, and leisure activities for AYA. We adapted it for delivery by Zoom using PowerPoint presentations and screen-sharing. Facilitators used a guided discovery approach with prompts and questions over direct instruction. In addition to addressing existing areas of life, participants chose novel areas to promote further learning of START strategy. We screened 123 patients; 46 were deemed eligible after SCD provider referral. Of the 28 AYAs approached, 18 consented (61.5%). The top reasons patients declined were lack of interest or time. To date, 9 participants have completed pre-program assessments, 8 are engaged in intervention, and 1 has finished the program and post-program assessments. Post-session surveys to date reveal that strategy training is feasible, valuable, and applicable to daily life. All participants reported that Zoom was an effective method and reduced barriers for participation related to transportation and time. Surveys provide valuable feedback for intervention refinement. Preliminary results support the feasibility and acceptability of a metacognitive strategy training delivered primarily via Zoom for AYA with SCD and executive dysfunction. Estimates of effect are pending final data collection. This study paves a way for occupational therapy to work with this underserved population.


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