Creating a Patient Decision Aid to Guide Treatment for Parents of Babies with Ankyloglossia: An Evidence Based Practice Project

by Sally Danto


Rationale: Ankyloglossia is a term used to describe a “condition of limited tongue mobility caused by a restrictive lingual frenulum” (Messner et al., 2020) and may cause breastfeeding inefficiency or maternal breast or nipple pain. Evidence is clear that maternal nipple and breast pain consistently improved after performing ankyloglossia release, in addition to improvement in infant feeding behaviors and breastfeeding self-efficacy. However, there is little evidence in the literature indicating a preferred ankyloglossia release technique, timing of procedure or long-term effects of ankyloglossia. Ankyloglossia diagnosis is not uniform, and controversy exists regarding which patients should undergo a release. Therefore, decision making can be difficult for parents of infants with ankyloglossia when navigating treatment options.

Purpose: The purpose of this project is to develop an evidence-based patient decision aid (PtDA) using the Ottawa Patient Decision Aid Development Process to guide parents in decision making regarding ankyloglossia treatment options.

Intervention: The implementation will be biphasic. The first phase includes completing the Ottawa Patient Decision Aid and eTraining. Following the established decision aid creation process, a needs assessment will be completed in order to compile data regarding the demand for a decision aid. The needs assessment will include gathering feedback from various stakeholders including practitioners who offer intervention for ankyloglossia and parents of babies with ankyloglossia. The PtDA will then be developed and finalized. The second phase will be the implementation of the patient decision aid to parents of children under 2 years of age, diagnosed with ankyloglossia and seen in the Plastic and Maxillofacial surgery department and Otolaryngology clinic at a large pediatric teaching hospital. The Traditional Decisional Conflict Scale (DCS) survey will be administered to each parent after reviewing the PtDA to measure personal perceptions of uncertainty and effective decision making. Type of procedure chosen will also be tracked over time to inform institutional trends.

Methodology: For this evidence-based practice project, the John Hopkins Model was used to guide literature synthesis and organizational recommendations.

Plans for analysis: The outcome of interest is decisional conflict as measured by the DCS score. Other outcomes of interest include whether the decision was made to move forward with a procedure, and which type of procedure was selected. The DCS score is a 16-item scale that produces a total score (0-100) and 5-subscales (uncertainty, informed, values, support and effective decision). Lower scores indicate readiness for decision making and scores greater than 37.5 are associated with decision delay or feeling unsure about a decision.

Discussion: Results will indicate whether a PtDA aided parents in making health care decisions for their child diagnosed with ankyloglossia. As health care is advancing toward family centered care and shared decision making, a PtDA may compliment counseling from a health care provider.