Emerging adults with sickle cell disease (EA-SCD) have a lot of challenges when leaving pediatrics and entering into adult care. Ninety-five percent of children with SCD survive to age 18, but there is a 43 percent risk of death within two years of leaving pediatrics. EA-SCD often lose their public insurance and are unable to receive care. Very few adult providers have experience caring for EA-SCD. The average SCD adult lifespan has not improved in the past 10 years, and is still in the mid-forties. During transition, EA-SCD often depend on the emergency department (ED) and do not receive preventive care. High ED visit, admission, and readmission rates and prolonged hospital stays occur, and they have poor quality of life. Readmissions to the hospital are linked to a high risk of death. EA-SCD may not make it to routine appointments and miss out on treatments to keep them healthy to prevent crisis. They therefore suffer more complications from SCD.
There is no standard way to help EA-SCD during transition and to educate them about SCD. Other conditions have used organized education protocols to help with transition and have tried using peer support (PS) with positive results. PS helps individuals build confidence and the ability to do the things needed to stay healthy. This project will help identify how best to support EA-SCD during transition to avoid early death by comparing PS plus use of organized education protocols in the clinic against using organized education protocols alone, and how effective each approach is in reducing ED visits and admissions and in improving quality of life. We believe that adding PS will make a difference in helping EA-SCD remain involved in their care and motivated to be healthy.
We believe that involving patients at every step will make it easier to complete the study and help motivate clinics to adopt the approved standards for transition. We would like to provide proof to insurance payers and hospital systems to support the intervention that is most effective so that EA-SCD start living longer and having better outcomes as they get older.
Sites will be randomized to receive either the PS and standard education or standard education only. All sites will incorporate a standard education curriculum for all EA-SCD and be trained on how to incorporate the six standards of transition programs as a quality improvement project. At sites getting PS, EA-SCD will be paired with trained mentors for at least two years; mentors can communicate with mentees by phone, Skype, or instant messaging. The EA-SCD will come from 14 pediatric SCD clinics in North Carolina, South Carolina, Georgia, Kentucky, Alabama, Mississippi, and Virginia that will partner with an adult SCD clinic and a community-based organization that will appoint EA-SCD to clinic transition team to give advice. There will be 350 EA-SCD in each group, from a total of 1,516 EA-SCD who are 16–25 years old, are not pregnant, can complete study activities, and have no significant medical limitation. The study will measure change in ED visits, admissions, and visits to adult SCD providers, and improvements in self-care ability and quality of life.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.