Study Investigates Why Rate of Attribution is High Among Cleft Lip and Palate Patients

Alyssa KirkmanJournal

  • Team clinics strive to minimize disruption to patient families’ lives
  • Reasons for patient attrition are multifaceted
  • Improved family education, personalized care may help ensure continuity of care

 CHAPEL HILL, N.C. / Nov. 13, 2019 – Researchers at Washington University in St. Louis, Missouri, recently examined the rate of attribution among patients with cleft craniofacial anomalies at their facility. Their results were published in the November 2019 issue of The Cleft Palate-Craniofacial Journal (CPCJ).

“The complex medical care that patients with cleft and craniofacial anomalies need often requires a collaborative effort among multiple health-care providers, and can include family counseling and education in addition to the actual care of the patient,” said lead research Danielle C. Cooper, M.D. “Through multidisciplinary team clinics, we can streamline and coordinate care to minimize the disruption of daily life for patients’ families. However, despite the benefits that team clinics offer to our patients, there was concern that cleft-craniofacial patients were leaving clinic prior to the completion of care.”

The study sought to understand when and why patients and families stopped coming to team clinic and identify patients who were at risk of missing key interventions due to premature departure from team care.

Clinic attendance data from January 2002 to September 2012 were reviewed. The patient’s age at last visit, sex, race, distance traveled to clinic based on zip code, and insurance status were noted. To assess reasons for loss to follow-up care, an anonymous brief survey was sent to the parents of patients who missed scheduled visits for the previous three years and had an email address on file. The survey questions were designed to identify reasons families forgo returning to team care. In addition, researchers queried patient families in the facility’s database 15 months after the initial query to determine whether any patients returned to clinic after being previously lost to follow-up. These patients’ charts were reviewed to identify reasons for returning to team care.

“Decision-making is, at the end, a binary process based on the sum of anticipated reward and cost. To take a child to a team visit, or not, is no exception. In this article by Cooper et al., examining the attrition rate of 983 patients followed for at least 2 years since last visit, the authors found 62% did not complete the entire treatment protocol by age 16 and 25% of patients with orofacial cleft were lost to follow up by age 8,” said Jack C. Yu, DMD, MD, MS ED, Editor of CPCJ. “While the ultimate reason for such decision is very difficult to pin down, the proximate cause is simple: the perceived reward (benefit) is less than the anticipated cost (burden) of the action. Agreeing with this, ‘Don’t see a need’ is indeed the most frequent response, followed by ‘Cost’ for not returning. Of interest, the ‘usual suspects’, socioeconomic, distance traveled, and insurance status, were not statistically significant variables.”

During the study’s time period, researchers found that attrition rates are high within their facility. Among patients with complete cleft lip and palate, 62 percent of these were lost prior to graduating from care. Socioeconomic status, insurance status, and distance traveled to clinic did not appear to correlate with a patient’s likelihood for becoming lost to follow-up, but minorities seemed to be at a greater risk of becoming lost to team care than Caucasian and Asian patients.

“A full quarter of patients with cleft are lost to our care by 8 years of age, during the time of mixed dentition when they should be undergoing preparation for alveolar bone grafting,” Cooper said. “There is concern that these patients may not be receiving important surgical intervention to prevent associated abnormalities in adulthood that can affect their nasal and lip aesthetics, dentition, and speech.”

Overall, the researchers noted that the reasons behind the high rate of attrition at the cleft-craniofacial clinic were multifaceted. Further in-depth research to examine the burden of care on patient families will enable health-care teams to address issues that affect follow-up. In addition, improved family education and personalized care are needed to help ensure continuity of care for these medically complex patients and reduce attrition rates.

“According to Daniel Kahneman, the recipient of the 2002 Nobel Prize in Economics, what we experience is often not the same as what we remember,” said Yu.  “Episodic memory, unlike semantic memory, is stored in the dentate gyrus, which receives the principle dopaminergic inputs from the master pleasure center of the mesolimbic system, the ventral tegmental area. In addition to delivering better care at lower cost, teams must seek to re-program the reward circuits of the parents by improving the memory of the visits (hippocampus), focusing their attention (pre-frontal cortex), increasing the motivation (nucleus accumbens) and desire/emotion (amygdala) for the care of their children.”

To learn more about the American Cleft Palate-Craniofacial Association and cleft and craniofacial conditions, please visit

About the American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit 501(c)(3) association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. Since 1943, ACPA has worked to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy and interdisciplinary team care. ACPA also provides information to affected individuals and families and seeks to educate the public about facial differences through its ACPA Family Services program. For more information, please visit

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