It’s a challenge in sickle cell disease care: equipping young patients with the skills and tools to manage their health as adults. Here’s how we’re making that transition easier than ever.

Women's Health, Men's Health, Your Health | 5 years ago

Sickle Cell Disease, Part 2: Improving Long-Term Care

Atrium Health is making sickle cell disease patients’ transition from pediatric to adult care easier and more effective than ever.

This is part two of a four-part series on Atrium Health’s innovative, holistic approach to sickle cell disease care.

 

As healthcare enables people with sickle cell disease to live longer, better lives, the medical community has taken on a new challenge: how to transition patients from pediatric to adult care.

This transition period for young adults between ages 18 and 25 – the years when they need to acquire the knowledge and skills to take greater responsibility for their healthcare – is critical. Yet the number of young adult sickle cell disease patients is beginning to outpace the number of specialists who have the expertise to guide them.

“There is a three-fold increase in mortality rates among young adults with sickle cell disease when they leave pediatrics and enter adult care,” says Ifeyinwa Osunkwo, MD, MPH (known as Dr. Ify to her patients), leader of Atrium Health’s comprehensive sickle cell disease program at Levine Cancer Institute. “We have to ask: How do we help this niche population?”

It’s a big question, and it has elicited many answers that are changing the field, both in new techniques and new technologies.

A New Grant, Funding Big Discoveries

One answer has come through a grant from the Patient-Centered Outcomes Research Institute (PCORI). In September 2017, PCORI awarded a $9.8 million grant to Atrium Health. Dr. Ify is the principal investigator for the PCORI grant, which funds improvements to the transition of sickle cell disease patients from pediatric to adult care.

One key aspect of these improvements is standardization. All teenagers require the same six steps in their treatment, so Atrium Health has created a continuity of care by continuing those same six steps during their transition into adult care.

“We are at the forefront a groundbreaking intervention for our sickle cell disease patients,” Dr. Ify says. “With this program, patients who are 18 or 19 won’t feel lost. They’ll remain in care. They’ll remain with a provider who knows sickle cell disease, who cares for them and who works with them to ensure that their lives don’t become fragmented.”

Engaging Research and Innovation to Redefine Care

Atrium Health is also participating and engaging in clinical research and clinical trials in the treatment of sickle cell disease. Part of that research involves the development of an app specifically for sickle cell disease patients. The idea is that patients will use the app daily to track pain levels, water intake and medication administrations. By logging these reports, patients and their providers will hopefully be able to identify trends that lead to medical crisis and help prevent those in the future.

As new developments in sickle cell disease treatments continue to improve patient outcomes, the need arises for the medical community to continually raise the bar to keep up with those outcomes – and aim for even better ones.

“One of our biggest goals is to help people with sickle cell disease live longer,” says Daniel McMahon, MD, director of the pediatric sickle cell disease program at Atrium Health’s Levine Children’s Hospital. “But it’s also to help them become healthy adults with a good quality of life.”

Teammate Spotlight: Shirley Miller

When Shirley Miller was diagnosed with sickle cell disease at 3 years old, she was told that she probably wouldn’t live to be 21. Now in her 60s, Miller is not only maintaining good health, but she’s dedicated her career to helping others do the same. She works as a project manager for Atrium Health’s sickle cell disease program.

“When I was born, no one really knew a lot about sickle cell. It was a lot of trial and error trying to figure out what was going to help me,” Miller says. “I spent a lot of time in and out of hospitals, being stuck with a lot of needles and in a lot of pain. It took a while for my family to even figure out what it was that I had and how to manage the disease.”

After beating the odds, Miller decided to become a community advocate for sickle cell disease. While speaking at a national association conference in Dallas, TX, she met Dr. Ify.

Miller was drawn to Dr. Ify’s work in transitioning pediatric patients to adult care, assistance that she lacked in her own journey with the disease. After their initial meeting, Dr. Ify offered Miller a role at Atrium Health in Charlotte. Miller is now able to offer the support and information to younger patients that she wishes she had as a pediatric patient.

“Sometimes it's an eye-opener when people meet me because they say, ‘You're that old and you're doing well?’ And I have to tell them, ‘Look, it works. If you do what your care team tells you to do, you can live a long life with sickle cell,’” Miller says.