Adolescents and Young Adults: Dilemmas, Education, and Choices Impacting Decisions (AYAs DECIDe) Study

NIH RePORTER · NIH · K23 · $167,455 · view on reporter.nih.gov ↗

Abstract

Modified Project Summary/Abstract Section The proposed 5-year K23 award describes a research training program for Kristina Suorsa-Johnson, PhD, a licensed pediatric psychologist who specializes in differences of sex development (DSD). Her overarching career goal is to become an independently funded investigator focused on improving the psychosocial and health outcomes of pediatric patients with DSD by creating tools to facilitate patient engagement in medical decision making through shared decision making (SDM). This award provides support for Dr. Suorsa-Johnson to achieve the following Career Development Aims: Aim 1: Obtain expertise in SDM, including the development of decision aids (DAs) for adolescents and young adults (AYAs); Aim 2: Gain sexual health education training, particularly as it relates to the creation of educational materials to enhance surgical SDM; Aim 3: Develop expertise in evaluating and implementing DAs; and Aim 4: Expand and strengthen research leadership and management skills. To achieve these goals, Dr. Suorsa-Johnson has assembled a dedicated team of mentors and advisors with expertise in SDM (Angela Fagerlin, PhD), SDM in AYAs (Ellen Lipstein, MD), sexual health education (Jordan Rullo, PhD), dissemination and implementation science (Jennie Hill, PhD), qualitative design and clinical trials (Melissa Watt, PhD and Angela Fagerlin, PhD), multi-site trial design (Gregory Stoddard, MBA, MPH), urogenital/gonadal surgeries in AYAs (Kathleen van Leeuwen, PhD), and DSD education (David Sandberg, PhD and Erica Weidler, MEd, MS). A person with lived experience, Noi Liang, MBA, MCPA, is consulting to ensure all aspects of the project align with the needs of those with DSD. DSD are congenital conditions where chromosomal, gonadal, or anatomical sex development is atypical. AYAs with DSD make critical and potentially irreversible, lifealtering urogenital/gonadal surgical decisions. However, we know little about how AYAs approach surgical decision making and no standardized SDM resources exist. As such, Dr. Suorsa-Johnson proposes to create and pilot a set of surgical DAs for AYAs with DSD. This will be achieved through three Specific Aims: Aim 1: Identify informational needs and values influencing surgical decision making for AYAs with DSD; Aim 2: Develop a set of evidence-based DAs for surgical decisions to facilitate SDM for AYAs and their caregivers; and Aim 3: Pilot test and refine DA content, delivery, and feasibility. This project will result in a set of surgical decision aids ready to be tested in a multi-site trial. This project is significant because it will change how we provide care and improve engagement in surgical decision making for this underserved population. This innovative project is the first to explore the needs of AYAs with DSD making surgical decisions from a SDM framework and create associated decision support tools.

Key facts

NIH application ID
10985653
Project number
1K23HD113825-01A1
Recipient
UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
Principal Investigator
Kristina Irene Suorsa-Johnson
Activity code
K23
Funding institute
NIH
Fiscal year
2024
Award amount
$167,455
Award type
1
Project period
2024-09-18 → 2029-06-30