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  • Research & Results
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  • Comparing Transitional Care for Teens...

Comparing Transitional Care for Teens and Young Adults with Sickle Cell Disease with and without Peer Mentoring

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Project Summary  

PCORI has identified the transition from pediatric to adult care for young adults with sickle cell disease, or SCD, as an important research topic. PCORI launched an initiative in 2016 on Management of Care Transitions for Emerging Adults with Sickle Cell Disease to learn how to improve this care transition. The initiative funded this research project.

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Sickle cell disease, or SCD, is a long-term illness that causes red blood cells in the body to break down and change shape. Doctors often diagnose SCD at birth with a blood test. SCD affects both children and adults. People with SCD may have pain and feel tired. Some may develop more serious symptoms, such as problems with their eyes, kidneys, or heart.

As children with SCD become adults, they start to take charge of their own care. They may rely less on their parents’ help. They may also switch from their childhood doctor to one who treats adults. Young adults with SCD aren’t always ready for these changes. At the same time, many doctors and nurses may not know how to help young adults with SCD transition to adult care. In particular, they may not know about community supports that could help young adults. Between the ages of 16 and 25, young adults with SCD are more likely to go to the hospital and have an increased risk of dying.

In this study, the research team is comparing two ways for pediatric and adult clinics to help patients with SCD transition successfully to adult care. The first is a structured education-based program. The second is a structured education-based program plus a one-on-one, virtual peer mentoring program. Peer mentors have SCD and are between the ages of 26 and 35. They help patients build confidence and learn ways to stay healthy. The team is looking at the effectiveness of using peer mentors to improve patients’ quality of life and decrease emergency room, or ER, visits.

Who can this research help?

Healthcare organizations and health insurers can use findings from this study when considering how to support teens and young adults with SCD as they transition from pediatric to adult care.

What is the research team doing?

The research team is working with 14 sites in eight states to recruit 700 teens and young adults ages 16 to 25 with SCD. Each site includes a pediatric SCD clinic, an adult SCD clinic, and a partner community-based organization, or CBO.

The research team is assigning sites by chance to one of two groups:

Structured education-based program. Staff at each site work together to implement the Six Core Elements of Health Care Transition.™ The Six Core Elements provide a standard process for pediatric and adult clinic staff to support patients with SCD as they transition from pediatric to adult care. As part of the process,

  • Clinic staff create a standard policy to guide patients through transition.
  • Staff create a method to track patients through their transition.
  • Staff assess each patient to find out whether they are ready to transition to adult care.
  • Staff work with each patient to create a plan to transition to adult care.
  • Patients transition to adult care, with close communication between staff at pediatric and adult clinics.
  • Staff monitor each patient to make sure they continue to get care.

Structured education-based program plus peer mentoring. In addition to the structured education-based program, patients are assigned a trained peer mentor for at least two years. Peer mentors have SCD and have successfully transitioned to adult care. Peer mentors attend online and in-person training at partner CBO sites on how to be a peer mentor. Patients and peer mentors communicate by phone or instant messaging using a secure program.

Patients are filling out online surveys at the start of the program and every six months for up to five years. The surveys ask patients about their quality of life, their ability to care for themselves, and their satisfaction with the transition process. The research team is using medical records to look at how often patients go the ER or are admitted to a hospital, and how often they see their SCD and primary care providers. The team is also comparing patients who get care at small or large clinics.

Patients, caregivers, and staff from partner CBOs are working with the research team to help guide the study.

Research methods at a glance

Design Elements Description
Design Cluster randomized controlled trial
Population 700 teens and young adults ages 16 to 25 who have SCD, receive care in a pediatric SCD program, are not pregnant, and have access to a telephone
Interventions/
Comparators
  • Structured education-based program
  • Structured education-based clinic program plus peer mentoring
Outcomes

Primary: change in average number of acute care visits per year

Secondary: self-reported quality of life, sickle cell quality of care received, perceived social support, satisfaction with transition process, number of ambulatory visits to adult SCD providers, number of hospitalization days, 14- and 30-day hospital readmission rates, pediatric and adult clinic transition process measurement score

Timeframe Up to 5-year follow-up for primary outcome

Project Details

Principal Investigator
Ifeyinwa Osunkwo, MD, MPH
Other Principal Investigator
Raymona Lawrence, DrPH, MPH
Project Status
In progress; Recruiting
Project Title
Comparative Effectiveness of Peer Mentoring versus Structured Education-Based Transition Programming for the Management of Care Transitions in Emerging Adults with Sickle Cell Disease
Board Approval Date
September 2017
Project End Date
March 2024
Organization
Carolinas Medical Center
Year Awarded
2017
State
North Carolina
Project Type
Research Project
Health Conditions  
Blood Disorders
Sickle Cell Disease
Genetic Disorders
Rare Diseases
Intervention Strategies
Care Coordination
Other Health Services Interventions
Technology Interventions
Training and Education Interventions
Populations
Children -- 18 and under
Individuals with Rare Disease
Low Health Literacy/Numeracy
Racial/Ethnic Minorities
Rural
Urban
Funding Announcement
Management of Care Transitions for Emerging Adults with Sickle Cell Disease
Project Budget
$9,753,462
Study Registration Information
HSRP20181364
https://clinicaltrials.gov/ct2/show/NCT03593395
Page Last Updated: 
July 24, 2020

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Meetings & Events

January 21
Cycle 1 2021 Broad PFA Applicant Town Hall
February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021

PCORI

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Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
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