TaLana Hughes

Why I Participate: TaLana Hughes, MPH

Full Story TaLana Hughes, MPH, Executive Director of the Sickle Cell Disease Association of Illinois, shares why she participates in the Sickle Cell Disease Treatment Demonstration Program.

Blood Transfusion

Community Health Workers Provide a Safety Net for Patients with Sickle Cell Disease

Full Story Increasing the number of patients with sickle cell disease (SCD) who receive regular care from knowledgeable providers is one of the three main goals of the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), for which NICHQ is the national coordinating center. But what happens to patients with SCD who have trouble initiating or remaining in treatment?

Girls in arms outside

Using Telementoring to Improve Care for Patients With Sickle Cell Disease

Full Story At the outset of every project, we determine how it will relate to our three areas of focus—bridging health and healthcare, improving systems of care, and increasing support for healthy beginnings. Recently, three new projects have touched on these foundations, progressing towards improvements in
systems for children’s health and outcomes for families.

Telementoring ECHO

Using Telementoring to Improve Care for Patients With Sickle Cell Disease

Full Story In the United States, nearly 100,000 people have the inherited red blood cell disorder sickle cell disease (SCD), yet access to knowledgeable providers throughout their lifespan is one of the biggest challenges for these patients. With a desire to narrow this disparity, groups of SCD experts are teaching healthcare providers how to capably manage patients with SCD by harnessing the power of technology, including telementoring.

Dr. Suzette Oyeku

Trends in Sickle Cell Disease Focus on Therapeutic Treatments, Care Transitions and Global Health

Full Story Since NICHQ was named the National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) in 2010, there have been increases in the number of providers prescribing disease modifying therapies, such as hydroxyurea to treat patients with sickle cell disease (SCD), better care in emergency departments, along with increases in the number of patients receiving regular care with providers knowledgeable about treating SCD. As the project enters into a new phase, we recently sat down with Suzette Oyeku, MD, MPH, medical director for NICHQ's sickle cell work to learn more about the project's evolution and learnings.

Four Years of Sickle Cell Disease Care Improvements

A Look Back at 4 Years of Improving Sickle Cell Disease Care at a Systems Level

Full Story NICHQ convened grantee teams and collaborated with them to focus on areas of similarity (acute care; care coordination/medical home; screening and follow up; self-management; and transition of care) to achieve breakthrough improvements in care for children and adults with SCD.

Sickle Cell Pain in the Emergency Department - A Guide to Improving Care

New Guide for Improving Sickle Cell Disease Treatment in the ED Helps Close Disparity Gaps

Full Story Sickle cell disease patients wait in excruciating pain longer than they have to for treatment. Guidelines do exist, but they have not been consistently implemented, particularly in acute care settings. Our new guide was designed to help providers bridge this gap.

Precious and her son Melvin

How One Mom is Raising the Profile of Sickle Cell Disease

Full Story Precious received her first blood transfusion at the age of two. It was the beginning of many stays in the hospital that would prove isolating and difficult for the young family.

Child Smiling In The Afternoon

Sickle Cell Pain Protocol Reduces Wait Times for Meds and Eases Patient Frustration

Full Story When kids with sickle cell disease come to an emergency room (ER) asking for painkillers, the care can sometimes be less than ideal. In a busy ER, there can be long wait times, and, especially with an illness like sickle cell disease that has no visual signs of pain, doctors sometimes question whether a patient is really in a medical crisis or just drug seeking.

Sickle Cell Disease Model

Teams Make Giant Leaps in Improving Care for People with Sickle Cell Disease

Full Story Through the Sickle Cell Disease Treatment Demonstration Program, a quality improvement project involving teams across the U.S., many people with sickle cell disease are experiencing more timely and compassionate care in emergency departments, increased access to providers and more reliable provision of recommended screenings and therapies.

Andrea and Jonathan Williams

Why I Participate: Andrea M. Williams

Full Story Andrea Williams, who founded and leads the Children’s Sickle Cell Foundation in Pittsburgh, PA, is a parent representative and site lead in NICHQ's Working to Improve Sickle Cell Healthcare (WISCH) project.

Sickle Cell Disease

The Power of a Phone Call: Following Up on Sickle Cell Disease

Full Story When a mother received a letter from the Illinois Department of Public Health stating that her newborn tested positive for a blood abnormality, she complied with the request to schedule a follow-up blood test with her provider. At the follow-up appointment, the hospital reported to her that her child did not test positive for sickle cell disease.

Andrea Williams

When the ER Can’t Hear You: Tips and Transition Tools for Families with Sickle Cell Disease

Full Story Andrea Williams had no idea that she and her husband were both carriers for sickle cell trait until their fourth child, Jonathan, was born with the disease in 2000. When two people with the trait have children, each child has a 25 percent chance of having sickle cell disease and a 50 percent chance of carrying sickle cell trait.

Overcoming Confusion and Misinformation About a Life-Saving Drug

Full Story For the past seven years, Patricia Kavanagh, MD, who specializes in pediatric care at Boston Medical Center, participated in a camp that catered to children with sickle cell disease and other serious diseases. Initially, children with the genetic blood disorder were physically smaller and had less energy; Kavanagh constantly mistook children for being several years younger than they were.

Dennis McCullum

Brother Advocates for Change in Sickle Cell Disease Care

Full Story 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.

Leadership Engagement Is Critical

Leadership Engagement is Critical to the Success of Improvement Efforts

Full Story There’s no easy way around it: change is hard, and resistance to change comes in many forms. Oftentimes, proposed changes aren’t viewed as doable or as a priority. Regardless of the type of opposition, teams working on everything from breastfeeding support to sickle cell disease are finding ways to ensure leadership commitment to help overcome organizational resistance.

Resource thumbnail image

Leaving the Pediatric Cocoon

Read Story Transitioning from pediatric to adult care for patients with sickle cell disease is a matter of life and death—literally. With data showing there is an increase in mortality during the time individuals with sickle cell disease transition into the adult world, teams on NICHQ’s WISCH program are working together to address various aspects of sickle cell healthcare, in particular care transition and patient advocacy.

Doctor Smiling

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

Full Story 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.

Technology Improves SCD Care

Technology Improves Sickle Cell Disease Care Beyond the Clinic

Full Story Sticking to a daily medication regime can help SCD patients manage their disease, but sometimes it’s hard for patients to remember to take medication, particularly if they are transitioning to adulthood and not used to managing their own care. The WISCH team in California is working with a technology that monitors when pills are removed from a prescription bottle.

Dr. Ohene Frempong

Q&A with Dr. Kwaku Ohene-Frempong: The Importance of Sickle Cell Screening and Disparities between the US and Abroad

Full Story Kwaku Ohene-Frempong, a pediatric hematologist at Children’s Hospital of Philadelphia, has been working to improve the care of people with SCD, both in the United States and abroad. Ohene-Frempong talks about the progress and remaining gaps in screening, and shares his global perspective on the disease.

Texting to Help Families with Sickle Cell Disease

Texting to Help Families with Sickle Cell Disease

Full Story Catherine Hoyt, a member of the WISCH Missouri quality improvement team, makes home visits to children with sickle cell disease. But, when many families weren't keeping their appointments, Hoyt responded to parent feedback and started texting them to remind them of visits. Now, she texts or calls the day before a visit and only goes to the house if she receives a confirmation. The appointment completion rate is now at 75 percent.

Questions and Answers

Q&A with Lynnie Reid

Full Story As the parent of two children with sickle cell disease, Lynnie Reid has spent decades dealing with medical systems. She has struggled with gaps and inconsistencies in care, particularly dangerous for those with the genetic blood disorder. As Reid encountered challenge after challenge while trying to secure care for her children, she became an impassioned advocate for bettering health systems.

Using quality improvement techniques, BMC slashed to half its wait time to first pain medication for sickle cell patients in the pediatric ED.

Treating Pain More Quickly for Children with Sickle Cell Disease at Boston Medical Center

Full Story Healthcare providers at the Boston Medical Center (BMC) have slashed in half the time it takes to deliver pain medications to sickle cell patients seeking help in the pediatric emergency department (ED), and they did it in just over a year. Now other professionals across the country are looking to them to address this common problem for people living with sickle cell disease.

Sickle Cell Disease

New Tennessee Center Offers Affordable Care to Sickle Cell Patients

Full Story When Dr. Michelle Williams first started practicing pediatrics in Nashville, TN, she noticed that many patients with sickle cell disease stopped receiving primary care treatment once they transitioned to adult care. Patients with the disease can lead functional lives with consistent medical treatment from primary care physicians and specialists. But without regular care, the genetic blood disorder can cause debilitating pain and lead to early death.