Patient ‘Navigators’ Help Manage Care and Overcome Social Obstacles for Patients with Sickle Cell Disease

April 16, 2013
By Kristina Grifantini

Managing a disease or complex health need can entail countless hours of effort: scheduling appointments, keeping track of treatment, and dealing with paperwork and insurance. It’s a burden for anyone, but struggling with unemployment, housing or other social issues makes it hard to prioritize health.

Patient navigator programs, begun mainly for cancer patients, train “navigators” to provide assistance to those who need help managing healthcare. A team in NICHQ’s Working to Improve Sickle Cell Healthcare project has adapted patient navigation to support people with sickle cell disease. The genetic disorder causes blood cells to change shape (“sickle”) under certain conditions, which can cause intense pain and eventually organ failure.

Coordinating Care

Often, people with sickle cell disease rely on hematologists for all of their care, rather than a primary care physician (PCP). In the transition to adult care, many patients have a hard time finding a PCP who understands sickle cell disease beyond childhood, since only a few decades ago the life expectancy for people with the disorder was much shorter. But having a PCP is important for managing general health concerns and referring to appropriate specialists.

"If a patient has any medical issue whatsoever they automatically think it’s sickle cell-related and go to their hematologist,” says Carol Reagan, program manager of the University of Colorado Denver’s Sickle Cell Care Network and lead of the local WISCH team. “The problem is that many of our adults living with sickle cell here in Colorado don't have primary care physicians nor do they understand the need to have one.”

Reagan and five of her colleagues trained at patient navigator programs in New York and Colorado and have worked with over a dozen sickle cell patients. They began by reaching out to local hematologists to find patients that might benefit from assistance.

“We came into the clinics and introduced ourselves, and talked with patients about how we could help them navigate issues in the health system, Medicaid or Medicare,” says Jackie Davis, one of the team’s patient navigators and a mother of two children with sickle cell disease. “We want to find them a doctor that they could feel comfortable explaining their situations to.”

The team discovered that many young adults coming into adult care have a particularly difficult time managing their healthcare, since many pediatric programs for sickle cell disease integrate hematology and primary care. “It’s almost like they’re flying blind now with no direction as to how to navigate their care,” Davis says.

At the same time as they met with patients, the patient navigators outreached in the local medical community, explaining the challenges of sickle cell disease to PCPs and asking if they’d be willing to take on new patients. In addition to connecting adults with PCPs, the navigators are also teaching pediatric patients the importance of having a PCP once they reach adulthood.

Overcoming Social Obstacles

Shortly after piloting the navigation program last year, the six navigators found most of the patients need assistance outside of healthcare, particularly with social resources related to housing, food and utilities.

“If those issues are not dealt with then their medical healthcare does not become a priority,” says Reagan. “If patients are having trouble with their rent then a call from a patient navigator reminding them about a PCP appointment is not going to do any good. We found that dealing with those social issues will help them to be a better patient.”

Davis discovered firsthand how to assist with multiple social stresses when she begun working with a homeless patient who was struggling finding a shelter.

“The shelters were rejecting her because she was on a controlled substance for pain for sickle cell disease,” says Davis, adding that most shelters do not allow people to bring in any kind of drug, even prescribed ones. “It was something we had to navigate around. We started to find her a place to stay, at a shelter or see if she had any family to help her.”

Eventually the team did find the patient a PCP and began to see her better manage her pain with rehabilitation assistance, according to Davis.

This is an extreme case. Most of the patients the navigators work with are single, unemployed males and the results have been mixed, adds Davis. Sometimes patients don’t understand what the navigators do, or assume they’re case workers. Meeting face-to-face helps, she says, as will further education.