Or register here
Global Search

Trusted Resources: Evidence & Education

Scientific literature and patient education texts

Back to Evidence & Education / Scientific Articles

The Teen Symposium: Engaging Adolescents and Young Adults With Sickle Cell Disease in Clinical Care and Research

key information

source: Clinical Practice in Pediatric Psychology

year: 2020

authors: Crosby, Lori E. Strong, Heather Johnson, Alisha Mitchell, Monica J

summary/abstract:

Objective:
In the United States, sickle cell disease (SCD) is the most prevalent genetic disorder affecting African American and Hispanic youth. Disparities in care have been reported for this population with adolescents and young adults (AYA) with SCD at increased risk for poor health outcomes. It is essential that AYA with SCD receive high-quality care and have access to disease-modifying therapies, yet engaging them in their care and clinical research studies to discover new treatments remains a challenge.

Method:
Our team developed an innovative approach to engage AYA with SCD in clinical care and research: the SCD Teen Symposium, which uses motivational interviewing strategies to educate AYA with SCD, their family members, and friends while providing concurrent opportunities for research participation.

Results:
Over a 6-year period, 81 AYA with SCD (47% male; Mage = 14.58, SD = 2.9) and 162 family and friends (48% male; Mage = 13.37, SD = 2.1) participated. Participants rated the symposium as acceptable (Mrating = 1.74, SD = 0.85) on a scale from 1 (excellent) to 5 (poor), and 72% reported they would recommend it to others. Research was rated as very important (Mrating = 1.21, SD = 0.46) by 81% of attendees on a scale from 1 (very important) to 4 (not important), and 82% reported increased trust in research. AYA suggested improvements including separate programming for younger and older teens.

Conclusions:
Results support the feasibility of the Teen Symposium as a model for increasing trust and potentially increasing participation in research. Future studies will determine whether it can be disseminated by other SCD clinics.

organization: Cincinnati Children’s Hospital Medical Center, USA; University of Cincinnati, USA

DOI: 10.1037/cpp0000323

read more

Related Content

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close

© 2023 rareLife solutions Inc.

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close