Brother Advocates for Change in Sickle Cell Disease Care

June 7, 2013
By Kristina Grifantini

Dennis McCullum
Dennis McCullum
When Dennis McCullum was a baby, his brother passed away at age 3 from complications of sickle cell disease. McCullum also suffers from the genetic disorder, which causes blood cells to change shape (“sickle”) under stress, temperature changes or other conditions. These altered blood cells get caught in blood vessels and can cause intense pain “crises,” frequently leading to tissue damage or organ failure.

A lack of understanding about the disease and the inability to objectively measure pain leads many healthcare practitioners to inconsistently treat patients. This is especially problematic in emergency departments (ED), where practitioners are hesitant to prescribe the sometimes large doses of pain medications needed to alleviate suffering.

“Nobody advocated for my brother so I’m doing it for him and nobody’s doing it for me so I better do it for myself,” says McCullum, 56, about why he is so passionate on making sure patients’ voices are heard. “Some of my peers are in such bad shape they can’t advocate for themselves either so I stepped up.”

NICHQ’s Working to Improve Sickle Cell Healthcare (WISCH) program is addressing aspects of sickle cell healthcare, such as transitioning from pediatric care, using technology to assist patients outside the doctor’s office, and helping patients find primary care physicians. Like many of NICHQ’s quality improvement efforts, WISCH helps providers and patient advocates work together to drive and direct meaningful change. McCullum is one such patient advocate, focusing on improving pain management, ED care and other areas.

TaLana Hughes, MPH, executive director of the Sickle Cell Disease Association of Illinois (SCDAI) says that input from McCullum and the other patients partnering with her team in the WISCH project has been invaluable. “It’s very important to have patient feedback when planning and conducting programs,” says Hughes, who has a 10-year-old daughter with sickle cell disease. “I don’t think that any healthcare program should take place without buy-in from patients.”

A Shared Way to Talk About Pain
Sickle Cell Disease Pain Charts
Click image for larger version (PDF). These pain management sheets let both adult and pediatric patients with sickle cell disease easily and effectively convey the intensity and location of their pain.

One of the improvement projects McCullum helped develop is a pain management chart. A major issue in sickle cell healthcare, he says, is that different practitioners will ask about pain in clinics and EDs, and there is no common, objective indicator of pain. McCullum’s pain management chart aims to remedy that.

The chart shows several levels of pain, color-coded and ranging from mild to intolerable. Next to each level is a figure of a person, so a patient can color in where he or she is feeling pain and to what degree (see image). The extra visual aid can help doctors and nurses understand a patient’s pain quickly and more effectively than asking patients to rate their pain on a 1-10 scale.

When sickle cell patients go to the ED and clinic they typically repeat answers about their pain to a half dozen different people. McCullum says the chart can help prevent some of the repetitive questioning and continue patient-doctor communication because, at some point, the pain can be so debilitating that “people may not be able to speak for themselves.”

Kay Saving, a pediatric hematologist at Children’s Hospital of Illinois/OSF St. Francis Medical Center, reported that her patients found it to be a useful tool and liked the ease of which they could illustrate their pain. McCullum adds that the integration of medication documentation within electronic medical records could help doctors deliver care more confidently and assist patients who sometimes can’t communicate their usual treatment for a pain crisis.

“If I say I usually take 10 milligrams of a painkiller and the ED gives me 1 milligram, that doesn’t help. That’s not even the tip of the iceberg,” says McCullum. “I’ve heard doctors say they don’t want to risk overdosing. They’re worried they’ll lose their licenses. But for a sickle cell patient, not having enough of a pain reliever to stop the pain crisis can lead to hospitalization and more serious damage.”

Teaching Self-Care

Also through the WISCH program, McCullum trained to conduct a six-week long chronic disease management workshop, which teaches stress management, the importance of healthy eating and exercising, how to communicate with healthcare providers, and other aspects that can have an impact when managing a chronic illness.

“He has been very helpful in the recruitment of participants as well as bringing that personal feeling of passion to the workshop,” says Hughes.

“Dennis is an excellent advocate,” adds Gwen Talley, sickle cell project manager at Chicago’s Christian Community Health Center.

However, the course itself has some barriers because sickle cell patients can’t always make the classes due to pain or fatigue. The team is starting to brainstorm solutions, such as possibly adapting some of the teaching material to share over Skype.

Learning to manage one’s disease is about becoming empowered, says McCullum, and learning those skills should happen when patients are young. “It reminds me of college. People don’t monitor if you’re there or not, that’s your challenge. People need to step up to the challenge, and sometimes need some help.”

Learn more about NICHQ’s work in this area: