Texting to Help Families with Sickle Cell Disease

A quality improvement team in Missouri checks in remotely and in-person to help children with the blood disorder.

November 15, 2012
By Kristina Grifantini

Catherine Hoyt
Catherine Hoyt, a member of the Missouri quality improvement team, makes home visits to children with sickle cell disease in St. Louis, Missouri. She helps families achieve developmental goals, like reading. Source: University of Washington School of Medicine.
Children with sickle cell disease face a number of serious issues, such as risks of infection, acute chest syndrome, and strokes. The inherited disorder causes blood cells to change shape, resulting in intense pain episodes that often require emergency department visits or hospitalizations. The precedence of these physical symptoms means that developmental progress of babies with the disorder is sometimes delayed.

“Because of the focus on sickle cell disease, some of the typical milestones fall by the side and we’ve noticed many children in this population tend to be delayed in language and other development,” says Catherine Hoyt, an occupational therapist at the Washington University’s School of Medicine Program in Occupational Therapy.

Hoyt, along with pediatric hematologist Allison King, MD, MPH, and others from the Washington University School of Medicine in St. Louis make up a local team in the Working to Improve Sickle Cell Healthcare (WISCH), a quality improvement effort led by the National Initiative for Children’s Healthcare Quality (NICHQ). Across the country, groups of professionals like the Missouri team are working to assist individuals with sickle cell disease by improving emergency room procedures, transitional care, screening and education.

After joining WISCH, the Missouri team established a Parents as Teachers program to help improve sickle cell care. Through the program, 21 families with children under the age of 3 who have sickle cell disease receive free monthly home visits and biannual assessments from Hoyt and the team.

“These visits focus on developmental goals. Recently we’ve been doing a big push to encourage families to read to the children by providing a free book at each visit,” says Hoyt.

While the families enrolled were generally satisfied with the program, many of the parents were not keeping their appointments. Hoyt would arrive for a visit only to find no one there, and weeks would pass by without a check on developmental progress. The parents—most of whom are in their early twenties—rely on cell phones and asked if she could text them to remind them of visits. So the team obtained a cell phone with caller ID “Sickle Cell” to use exclusively for the visits.

“We were having trouble maintaining family contact but since getting the cell phone last summer we’ve been able to text back and forth to maintain communications and do appointment scheduling,” says Hoyt. “I send a hello or reminder about a skill we had worked on about once a week for families that are interested in texting. Families also text me if they’re going to the hospital.”

Before using the dedicated cell phone, the Missouri team had a 50% completion rate for monthly scheduled visits—so about half the time Hoyt went to a home, the family wouldn’t be there because they forgot or were running late.

“I’d confirm on the landline, drive to the house, and they wouldn’t be there,” she said. 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. “Of those remaining 25 percent who miss appointments, it’s no longer because I don’t have communication with them, but because there was an outstanding circumstance, like the child was in the hospital,” she says.

The Missouri team plans to explore using cell phones and other technology in their other quality improvement efforts, particularly in helping teenagers transition from pediatric to adult care. Obstacles in transitioning can result in a lapse of care and negatively impact health.

“Simply put, our adolescents need to be better prepared for the transition to adult care,” says Allison King, MD, MPH, the principal investigator for the improvement project.

To assist their teenage patients, the team uses an adolescent autonomy checklist, which lists everyday tasks like doing laundry or balancing a checkbook. The team adapted the checklist (originally developed by the University of Washington) to reflect needs of adolescents with sickle cell disease. The modified checklist includes tasks like taking one’s own medicine or scheduling doctor’s appointments.

“Each month we check in on skills needed for independence with our sickle cell patients starting at age 13,” says Regina Abel, PhD, the research patient coordinator at the Occupational Therapy Program. She and the team have been monitoring their participating patients and testing quality improvement changes to refine the check-in process and discover which areas are most useful for the teenagers to focus on.

“These will likely include healthcare, money management and vocational concerns,” says Abel. In the future, the team plans explore using a phone app to help with transition.