Study Explores Facilitators, Barriers to Standardized Outcome Measurement for Cleft Care

agiannattasioACPA News, Journal

  • CL/P providers and staff support standardized outcome measurement and believe it will improve care delivery.
  • Study results may provide guidance for an implementation strategy of standardized outcome measurement..

CHAPEL HILL, N.C. Jan. 26, 2021–A recent study sought to identify facilitators and barriers to implementing standardized outcome measurement in care for patients with cleft lip/palate (CL/P). The results were published in the January 2021 issue of The Cleft Palate-Craniofacial Journal (CPCJ).

Measuring treatment outcomes in the same way at the same time for all patients (standardized outcome measurement) is a core requirement for evaluating and improving health care services. The American Cleft Palate-Craniofacial Association (ACPA) has identified monitoring treatment outcomes as a function of CL/P teams for more than 20 years. However, despite calls for inclusion of standardized outcome measurement as part of routine cleft care, cleft centers in the United States have struggled to achieve consistent collection of standardized measures for aesthetic, dental, and speech outcomes.

“There is an increasingly recognized gap between the interventions and practices that we know can improve health and health care delivery, and what is actually implemented in everyday practice,” said Erica M. Weidler, lead researcher. “This study sought to identify the characteristics of standardized outcome measurement that could either facilitate implementation in clinical practice or make it difficult to implement.”

The study used semistructured qualitative individual interviews with providers, staff, and caregivers at a large, multidisciplinary, ACPA-approved cleft team in the United States. The research team focused on collecting aesthetic, dental, and speech outcomes of patients at 5 years of age for several reasons: these are the core domains of early CL/P treatment; valid and reliable outcome measures exist for these domains at this age; and prior research shows these measures can be collected at this age.

The study also included experts from the United Kingdom involved in executing that country’s government mandate to collect standardized outcome measurements for all children with CL/P, to identify processes that led to successful implementation of standardized outcome measurement, and to identify the challenges that cleft centers in the United Kingdom consistently struggled to overcome.

Results of the study indicate that providers and staff involved in CL/P care support standardized outcome measurement and believe it will improve care delivery. They also are enthusiastic about the opportunity that standardized outcome measurement provides for comparing outcomes from different techniques, treatment protocols, providers, and cleft teams. However, this support for standardized outcome measurement among cleft team members is tempered by the perception that implementation would require addressing several known challenges in cleft care delivery, including patient recall to clinic, coordination across specialties, standardization among providers, and patients’ fears and anxieties about medical evaluation.

“Our results can be used to guide development of an implementation strategy for standardized outcome measurement that builds upon perceived strengths of the intervention and reduces or overcomes the perceived barriers,” Weidler noted. “While the strategy will need to be customized for each context, identifying common themes and effective components may reduce the challenges and ultimately speed implementation of standardized outcome measurement in cleft care.”

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

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 acpa-cpf.org.