LCI-HEM-SCD-ST3P-UP-001: A Comparative Effectiveness Study of Peer Mentoring [PM] Versus Structured Transition Education Based Intervention [STE] for the Management of Care Transitions in Emerging Adults With Sickle Cell Disease (SCD)

About the study

This multi-center study will compare the effectiveness of adding virtual peer mentoring (PM)
to a structured education-based (STE) transition program for emerging adults with sickle cell
disease to determine its effect on decreasing the number of acute care visits per year,
improving patient-reported outcomes, and reducing healthcare utilization among emerging
adults with sickle cell disease (EA-SCD)

Study point of contact

Ifeyinwa Osunkwo, MD, MPH
980-442-5119
ify.osunkwo@atriumhealth.org
Nirav Shah
916-607-9054
Nirav.R.Shah@atriumhealth.org

Locations

14 United States sites

Age

> 16 Years

Phase

N/A

Study type

Interventional

Gender

All

Interventions

Other

Compensation

Unknown

participation requirements

– Age 16 and < 25 years at the time of consent AND being cared for in a PEDIATRIC SICKLE CELL PROGRAM - Any sickle cell genotype - Not known to be currently pregnant - Ability to read and understand the English language - Subject is planned to be transferred to an adult sickle cell program within 6-12 months of consent

participation restrictions

– Already receiving one on one peer mentoring as part of a transition program -As
determined by the Investigator, uncontrolled undercurrent medical, psychiatric, or
cognitive condition, or social situation that would limit compliance with study
requirements

– Pregnant, incarcerated, or otherwise unable to attend all study related visits

– Lack of easy access to the technology required to complete study surveys (e.g.,
internet in home setting, public area or at local CBO) or to conduct mentoring
sessions

– Other factors that would cause harm or increase risk to the participant or close
contacts, or preclude the participants adherence with or completion of the study.

Mentor Eligibility Criteria:

– Be an adult living with SCD or a caregiver of an adult living with SCD who has
successfully transitioned to adult care (defined as having had at least 3 visits or a
year of continuous care with an adult sickle cell provider)

– Age 26-35 years

– Readily available access to a computer with internet

– Have completed and passed a background check

– Legally able to work in the United States

– Ability to read and understand the English language

– Endorsed by their healthcare provider as reliable and able to meet the physical,
psychological and cognitive requirements for serving as a mentor

Advisor Eligibility Criteria:

– Be an adult living with SCD or a caregiver of an adult living with SCD who has
successfully transitioned to adult care (defined as having had at least 3 visits or a
year of continuous care with an adult sickle cell provider)

– Age ≥ 36 years

– Readily available access to a computer with internet

– Have completed and passed a background check

– Ability to read and understand the English language

– Endorsed by their healthcare provider as reliable and able to meet the physical,
psychological and cognitive requirements for serving as an advisor

Locations

  • Birmingham, Alabama, United States, University of Alabama at Birmingham, 35233 [Recruiting]
  • Mobile, Alabama, United States, University of South Alabama Health System, 36617 [Recruiting]
  • Miami, Florida, United States, University of Miami, 33136 [Recruiting]
  • Saint Petersburg, Florida, United States, Johns Hopkins All Children's Hospital, 33701 [Recruiting]
  • Atlanta, Georgia, United States, Children's Healthcare of Atlanta/Emory University, 30322 [Recruiting]
  • Louisville, Kentucky, United States, University of Louisville, 40202 [Recruiting]
  • Bronx, New York, United States, Montefiore Medical Center, 10467 [Recruiting]
  • Charlotte, North Carolina, United States, Levine Cancer Institute, 28204 [Recruiting]
  • Charlotte, North Carolina, United States, Novant Health, 28204 [Recruiting]
  • Durham, North Carolina, United States, Duke University, 27705 [Recruiting]
  • Greenville, North Carolina, United States, East Carolina University, 27834 [Recruiting]
  • Winston-Salem, North Carolina, United States, Wake Forest Baptist Hospital, 27157 [Recruiting]
  • Greenville, South Carolina, United States, Greenville Health System, 29605 [Recruiting]
  • Richmond, Virginia, United States, Virginia Commonwealth University (VCU), 23298 [Recruiting]
Last updated 2021-06-01