Setting standard of care for children born with cleft lip and palate

Representatives from Texas Children's Hospital joined an international group of medical professionals, patients and parents to determine a standard set of outcome measures for children born with cleft lip and palate. This work is the first of its kind in pediatrics on an international stage and these guidelines will help all institutions develop a standard treatment of care for this population of patients and will be available for implementation this spring.

The team, which was formed by The International Consortium for Health Outcomes Measurement (ICHOM), evaluated the burden of treatment and complications, including number of interventions, major surgical complications and readmissions. It also took into account the health of the patient, looking at factors like speech, oral health, eating and drinking, appearance, body weight and psychosocial functioning. In keeping with ICHOM's commitment to measuring results that matter and reporting patient outcomes in a standardized way, these guidelines will help ensure all of a patient's needs are met.

Three representatives from Texas Children's, supported by hospital leadership, took part in the esteemed program, including Dr. Laura Monson, pediatric plastic surgeon at Texas Children's Hospital and assistant professor of surgery at Baylor College of Medicine, outcomes research nurse, Christy Hernandez, from the Texas Children's Hospital Outcomes & Impact Service, and craniofacial orthodontist at Texas Children's Hospital and assistant professor of plastic surgery at Baylor College of Medicine Dr. John O. Wirthlin. The working group was comprised of members from Australia, Canada, India, Netherlands, Spain, Sweden, the UK, and the U.S., and included participants from other organizations including Boston Children's Hospital, Children's Hospital of Philadelphia and Great Ormond Street.

"We are proud to be a part of the team that developed this important set of measures and to have collaborated with other respected medical professionals from highly esteemed institutions in this process," said Kathleen Carberry, nurse and director of Texas Children's Hospital Outcomes and Impact Service. "This work is the first of its kind and a step toward really examining the value of health care delivery from the patient's perspective."

Texas Children's has a large population of cleft lip and palate patients resulting in nearly 2,000 clinic visits and 500 surgical cases per year and the hospital will be following the new guidelines and measurements to ensure their needs are met. Texas Children's Cleft Lip and Palate Clinic already addresses many of the outcome measures listed in the ICHOM Standard Set, however it will be adding the measures of oral health, appearance and burden of care beginning in February.

"We're looking forward to seeing these guidelines put to use here at Texas Children's, and all over the world, to ensure the best possible care for these children," said Monson, who is currently studying the short-and long-term outcomes of patients with cleft lip and palate as part of a Texas Children's Hospital Auxiliary Fellowship award she was given. "These kids need – and deserve – every possible opportunity to live a healthy, happy, and well-adjusted life, and we believe these standards will significantly improve patient outcomes."

This is not Texas Children's first step towards improving the lives of patients with cleft lip and palate. After receiving feedback from patients about the hardships they endure and the challenges they face because they look different, Texas Children's launched a weekend camp last March, designed to provide children born with cleft lip and palate the chance to be themselves, make new friendships and gain the self confidence many of them lack due to their facial abnormalities.

Texas Children's follows its cleft lip and palate patients' clinical outcomes and quality of life for 18 years, tracking the patient's speech progress, the aesthetical development of the cleft lip and palate repair, as well as the progress of the child's emotional and psychosocial healing.

"Our team's dedication doesn't just stop with the patients we are currently treating," says Wirthlin. "We are committed to tracking the progress of our kids so we can perfect the already exceptional care we provide and improve clinical outcomes for those future families that will be seeking our help down the road. Helping to create these guidelines was just one more step in bettering our patients' lives."