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

> **NIH NIH K23** · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · 2024 · $167,455

## 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 organization:** UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
- **Principal Investigator:** Kristina Irene Suorsa-Johnson
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $167,455
- **Award type:** 1
- **Project period:** 2024-09-18 → 2029-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10985653

## Citation

> US National Institutes of Health, RePORTER application 10985653, Adolescents and Young Adults: Dilemmas, Education, and Choices Impacting Decisions (AYAs DECIDe) Study (1K23HD113825-01A1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10985653. Licensed CC0.

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