# Development of a Problem Solving Intervention to Improve Self-Management and Transition Readiness for Adolescents with Sickle Cell Disease

> **NIH NIH K23** · BOSTON MEDICAL CENTER · 2020 · $168,212

## Abstract

PROJECT SUMMARY
Mortality in sickle cell disease (SCD) has shifted away from childhood and to young adulthood, with patients
facing an increased risk of early mortality after leaving pediatric care. Lack of transition preparation and poor
support for the development of self-management skills play a significant role in the adverse transition
outcomes in this vulnerable population. It is therefore imperative to develop novel methods of self-management
support to prepare adolescents with SCD to manage their own health prior to leaving pediatric care. Problem
solving, a key component of many chronic disease self-management programs, helps individuals overcome
barriers to self-management. This makes problem solving an appealing intervention for adolescents with SCD
who face myriad social challenges associated with race and poverty while being expected to learn how to
manage a complicated chronic disease. This proposal describes a four year integrated research and education
plan to tailor and pilot-test an existing problem solving intervention developed by my primary mentors to
improve self-management and transition readiness in adolescents with SCD. My specific research aims are to:
1) conduct focus groups of adolescents with SCD and their parents to identify plausible intervention targets for
how problem solving strategies could impact SCD self-management; 2) tailor the generic problem solving
model to the specific function of improving self-management for adolescents with SCD based on the plausible
intervention targets identified in our first aim; and 3) conduct a single-arm adaptive pilot test of the tailored
intervention in order to optimize the content and delivery of the intervention through an iterative series of
quality improvement Plan-Do-Study-Act cycles. My educational objectives are to gain additional training in 1)
health behavior change, including normal adolescent development, and problem solving as a cognitive-based
behavior change strategy; 2) intervention development, including the use of qualitative methods to enhance
cultural competency; and 3) clinical trial design, including rigorous pilot methodologies and the design and
conduct of definitive trials. The results of this award will prepare me for my long term career goal as an
independent investigator focused on developing and evaluating interventions to improve transition for
adolescents with SCD. The research in this application builds directly on my prior work which has focused on
measuring transition readiness and developing quality metrics for transition in SCD. I have put together an
experienced mentoring team within a supportive research environment to help me gain the expertise
necessary to be successful in this work and in my long term career goals. The results of this project will lead
directly to a subsequent grant to conduct a multi-site RCT of our tailored intervention and will help establish my
career as an independent investigator and expert in transition in SCD.

## Key facts

- **NIH application ID:** 9851440
- **Project number:** 5K23HL135436-04
- **Recipient organization:** BOSTON MEDICAL CENTER
- **Principal Investigator:** Amy Sobota
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $168,212
- **Award type:** 5
- **Project period:** 2017-01-01 → 2020-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9851440

## Citation

> US National Institutes of Health, RePORTER application 9851440, Development of a Problem Solving Intervention to Improve Self-Management and Transition Readiness for Adolescents with Sickle Cell Disease (5K23HL135436-04). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9851440. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*