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Improving Continuity of Care for SCD Patients in the Transition from Pediatric to Adult Care

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6 Ideas
6 Votes
6 Participants

Transition age is when you start to encounter the discrimination a lot more, because you're not a cute little kid anymore that everybody has empathy for. You’re an adult, you’re grown and so they change, you receive different treatment.” -Patient

"When I turned 26 last October, I was under the impression that I would be kicked off my parent’s insurance at the end of 2019, but I got kicked off their insurance at the end of October and I was scrambling to try to fix that because my insurance didn't kick in until January 1, 2020, [...] I had a doctor's appointment that needed to be covered.” -Patient

I think [my pediatrician] did really well with me as a patient in that time period, but I didn't get transitional information. I didn't get that hand off. [...] [On transitioning to an adult healthcare provider] It just seemed like there wasn’t education on sickle cell, it didn’t seem like she knew how to approach or make a plan for me, or whatever it was. I didn't trust them being able to handle my care. [...] I think, even when I went to see my hematologist there was never a specific, this is your plan of action, this is what you need to do for you. It was just very generalized, this is what normally affects sickle cell patients, so this is the path we’re putting you on.” -Patient

Caregivers of children with SCD bear the burden of all care coordination, decisions, life interruptions, and more. Coordinating primary care, making healthcare and treatment decisions, paying for care, managing work and school absences when a child needs to go to the ER or be hospitalized are some of the caregiver's responsibilities. Healthcare for children with SCD is generally more welcoming, empathetic and knowledgeable than adult care.
When patients with SCD approach adulthood and need to rely less on their caregivers, they face many new and unfamiliar barriers: Securing multiple providers they might not fully understand, learning about health insurance options, making all their healthcare decisions, negotiating sick leave at work and school, being met with bias and discrimination in healthcare. This happens right around the time when they want to be most independent and to blend in with their peers, which also happens to be the time when SCD complications can become increasingly serious.


  • How might we facilitate the information flow between pediatric care and adult care?
  • How might we educate SCD young adult patients on health insurance options before they need to make decisions?
  • How might we educate and empower SCD patients to handle their condition and treatment before reaching transition to adult care?
  • How might we help caregivers assist in helping SCD patients gain more independence?
  • How might we assist SCD patients in finding and understanding their healthcare options?
  • How might we empower young adult SCD patients to get their unique needs met at work and school?
  • How might we ensure young adult SCD patients' rights are met at work, at school, and in healthcare?

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Improving Continuity of Care for SCD Pts in Transition from Pediatric to Adulthood, Dr. M Beverley & Team

•Our Goal Is To Hear the Patient First! •Create a Spot Check Methodology •Create a Patient Survey •Create an App which includes our Patient Survey, for the purpose of collecting data and improving patient outcomes*

1 Score
Comments 1

Combating Sickle Cell Disease, A Concept Note

There are mistrust and disconnect between the SCD patients and specialized SCD healthcare experts. Uncertified reviews cause misinformation and frustrations. Patients do not wish to disclose their condition to their friends, family, and employers in fear of losing their dignity and freedom. Patients do not know what resources are available to ameliorate their symptoms and to plan for their future. This concept note describes the idea of a web base platform where users can write validated...

1 Score
Comments 0

Continuity of Care and Policy in Transitioning for Patients with Sickle Cell Disease

This policy solution details improving continuity of care for SCD patients in the transition from pediatric to adult care. 

1 Score
Comments 0

Improving Medical Care by Integrating Sickle Cell Disease and Trait Education with Classroom Curriculums

Sickle Hemoglobin (SH) exists on a spectrum from Sickle Cell Disease (SCD) to Sickle Cell Trait (SCT). Lack of knowledge including the health complications of SH, safe and non-safe activities for those with SH, the inheritance pattern of SH and its effect on conception/offspring, is a significant factor in the cause of preventable deaths in patients with SCT/SCD. This lack of education is especially apparent in middle school, high school and college students. Children and young adults do not...

1 Score
Comments 0
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Avoiding the cliff

In non-Medicaid expansion states, youth with SCD who are enrolled in Medicaid or CHIP face the likely loss of health insurance when they become adults. This exacerbates all of the health, financial, social, and emotional challenges that accompany transition. Some of these youth have hospital utilization patterns that qualify them for adult SSDI coverage, though they are not likely to realize it unless state Medicaid programs are assertively and effectively promoting awareness of this...

1 Score
Comments 0

Peer2Peer Navigators

Individuals with sickle cell disease often look to their community organization or warrior peers for information. Why not leverage that trust by creating peer 2 peer/ community navigators to assist newly transitioned or lost to follow up (LTFU) patients to those with proven healthcare utilization and navigation skills. These peer navigators are not without their own disease complexities, but rather, have learned to utilize the healthcare system to improve their care and quality of life....

1 Score
Comments 0