Shared Decision-Making: Process for Design and Implementation of a Decision Aid for Patients With Craniosynostosis.

To describe the process of developing a craniosynostosis decision aid.We conducted a mixed-methods exploratory study between August 2019 and March 2020 to develop a decision aid about surgical treatment for single suture craniosynostosis.A single tertiary care academic children's hospital.The decision aid development team consisted of surgeons, research fellows, a clinical nurse practitioner, clinical researchers with expertise in decision science, and a university-affiliated design school. Qualitative interviews (N = 5) were performed with families, clinicians (N = 2), and a helmeting orthotist to provide feedback on decision aid content, format, and usability.After cycles of revisions and iterations, 3 related decision aids were designed and approved by the marketing arm of our institution. Distinct booklets were created to enable focused discussion of treatment options for the 3 major types of single suture craniosynostosis (sagittal, metopic, unicoronal).Three decision aids representing the 3 most common forms of single suture craniosynostosis were developed. Clinicians found the decision aids could help facilitate discussions about families' treatment preferences, goals, and concerns.We developed a customizable decision aid for single suture craniosynostosis treatment options. This tool lays the foundation for shared decision-making by assessing family preferences and providing clear, concise, and credible information regarding surgical treatment. Future research can evaluate this tool's impact on patient-clinician discussions about families' goals and preferences for treatment.

What do patients want to know about gender-affirming surgery? Analysis of common patient concerns and online health materials.

PURPOSE: Patients considering gender-affirming surgery often utilize online health materials to obtain information about procedures. However, the distribution of patient concerns and content of online resources for gender-affirming surgery have not been examined. We aimed to quantify and comprehensively analyze the most searched questions of patients seeking gender-affirming surgery and to examine the quality and readability of associated websites providing the answers. METHODS: Questions were extracted from Google using the search phrases "gender-affirming surgery," "transgender surgery," "top surgery," and "bottom surgery." Questions were categorized by topic and average search volume per month was determined. Websites linked to questions were categorized by type, and quality of the health information was evaluated utilizing the DISCERN instrument (16-80). Readability was assessed with the Flesch Reading Ease Score and Flesch-Kincaid Grade Level. RESULTS: Ninety questions and associated websites were analyzed. Common questions were most frequently answered by academic websites (30%). Topics included cost (27%), technical details of surgery (23%), and preoperative considerations (11%). Median (interquartile range) DISCERN score across all website categories was 42 (18). The mean readability was of a 12th-grade level, well above the grade six reading level recommended by the American Medical Association. CONCLUSIONS: Online gender-affirming surgery materials are difficult to comprehend and of poor quality. To enhance patient knowledge, informed consent, and shared decision-making, there is a substantial need to create understandable and high-quality online health information for those seeking gender-affirming surgery.

Using Patient-Reported Outcome Measures to Screen for Cognitive Function Deficits and Stigma in Patients with Single-Suture Craniosynostosis.

SUMMARY: Children with single-suture craniosynostosis have small but significant deficits in appearance ratings and neurodevelopment. Traditionally, these parameters are studied using a full battery of examinations, which are very time consuming. This study evaluated a convenient method to measure psychosocial parameters in this population by utilizing patient-reported outcomes measures to evaluate cognitive function and stigma. Stigma and cognitive function were measured, using the Patient-Reported Outcomes Measurement Information System and Quality of Life in Neurological Disorders questionnaires, in 59 consecutive patients at least 5 years old presenting to clinic from July of 2018 to January of 2020 with repaired single-suture craniosynostosis. Parents completed parent proxy cognitive function surveys for patients under age 8. Questionnaires were administered electronically as part of clinical care. Scores were automatically transferred to the electronic medical record and correlated with previously acquired Child Behavior Checklist results. Median time to complete the questionnaires was 57 and 49 seconds, respectively. Stigma and cognitive function were significantly correlated with the associated Child Behavior Checklist subscores (Spearman's rho, -0.384, p = 0.023; and Spearman's rho, -0.683, p = 0.001, respectively). The Patient-Reported Outcomes Measurement Information System and Quality of Life in Neurological Disorders questionnaires offer a convenient method of screening psychosocial parameters in children with single-suture craniosynostosis that otherwise would be difficult to obtain during standard visits. Short completion times and electronic scoring increase clinical utility. CLINICAL QUESTION/LEVEL OF EVIDENCE: Diagnostic, II.

Mind the Gap: Alveolar Bone Graft Revision in the Era of Computed Tomography.

OBJECTIVE: To determine the rate of revision alveolar bone grafting (ABG) in patients with cleft lip and palate (CLP) before and after the introduction of postoperative computed tomography (CT). DESIGN: Retrospective case-control study analyzing the incidence of revision ABG in patients with and without postoperative CT scans for graft success evaluation. SETTING: Academic tertiary care pediatric hospital. PATIENTS: Eighty-seven patients with CLP or cleft lip and alveolus treated with autologous iliac crest bone grafting for alveolar clefts over a 10-year period (January 2009 to March 2019) with minimum 6-month follow-up. Fifty patients had postoperative CT evaluation; 37 did not. INTERVENTIONS: Postoperative CT to determine ABG success, versus standard clinical examination and 2-dimensional radiographs. MAIN OUTCOME MEASURES: Requirement for revision ABG, defined as failure of the original graft by clinical or radiographic examination. RESULTS: Fifty-eight percent of patients underwent a postoperative CT scan at median interval of 10 months after surgery. Patients with postoperative CT evaluation had a 44% rate of revision ABG (22/50) for inadequate graft take, compared to 5% (2/37) in patients without postoperative CT (P < .001; 95% CT, 31%-58% in the CT group, 1%-16% in the non-CT group). CONCLUSIONS: Computed tomography evaluation after ABG is associated with a significantly increased revision rate for inadequate graft take. The presence of a secondary palatal fistula at the time of original ABG is not associated with revision requirement. Lack of standardized dental and orthodontic records complicates the study of ABG outcomes and presents an area for systems-based improvement.

Effects of Single-Dose Preoperative Pregabalin on Postoperative Pain and Opioid Consumption in Cleft Orthognathic Surgery.

BACKGROUND: Several studies have illustrated the efficacy of pregabalin in decreasing postoperative opioid use in adults undergoing orthognathic surgery. We aimed to study the effects of a single dose of preoperative pregabalin on total opioid consumption after orthognathic surgery in individuals with cleft lip and palate. METHODS: This is a retrospective cohort study of consecutive patients who underwent Le Fort I midface advancement between June 2012 and July 2019. All patients had a diagnosis of cleft lip and palate. The treatment group received a 1-time preoperative dose of pregabalin; the control group did not. Total morphine milligram equivalent (MME) consumption was calculated by adding intraoperative and postoperative opioid use during admission. RESULTS: Twenty-three patients were included in this study; 12 patients received pregabalin. The pregabalin group had significantly lower total opioid consumption (total MME 70.95 MME; interquartile range [IQR]: 24.65-150.17) compared to the control group (138.00 MME; IQR: 105.00-232.48) (MU = 31.00, P = 0.031). The difference in mean pain scores in the treatment group (3.21 ±â€Š2.03) and the control group (3.71 ±â€Š2.95) was not statistically significant (P = 0.651, 95% confidence interval -1.75 to 2.75). CONCLUSIONS: A 1-time preoperative dose of pregabalin before orthognathic surgery in patients with cleft lip and palate reduced total opioid consumption during admission without increasing patient pain. A single preemptive dose of pregabalin should be considered an effective adjunct to pain management protocols in patients undergoing orthognathic surgery.

Evaluation of the Patient-Practitioner Consultation on Surgical Treatment Options for Patients With Craniosynostosis.

INTRODUCTION: Endoscope-assisted craniectomy and spring-assisted cranioplasty with post-surgical helmet molding are minimally invasive alternatives to the traditional craniosynostosis treatment of open cranial vault remodeling. Families are often faced with deciding between techniques. This study aimed to understand providers' practice patterns in consulting families about surgical options. METHODS: An online survey was developed and distributed to 31 providers. The response rate was 84% (26/31). RESULTS: Twenty-six (100%) respondents offer a minimally invasive surgical option for sagittal craniosynostosis, 21 (81%) for coronal, 20 (77%) for metopic, 18 (69%) for lambdoid, and 12 (46%) for multi-suture. Social issues considered in determining whether to offer a minimally invasive option include anticipated likelihood of compliance (23 = 88%), distance traveled for care (16 = 62%) and financial considerations (6 = 23%). Common tools to explain options include verbal discussion (25 = 96%), 3D reconstructed CT scans (17 = 65%), handouts (13 = 50%), 3D models (12 = 46%), hand drawings (11 = 42%) and slides (10 = 38%). Some respondents strongly (7 = 27%) or somewhat (3 = 12%) encourage a minimally invasive option over open repair. Others indicate they remain neutral (7 = 27%) or tailor their approach to meet perceived needs (8 = 31%). One (4%) somewhat encourages open repair. Despite this variation, all completely (17 = 65%), strongly (5 = 19%) or somewhat agree (4 = 15%) they use shared decision making in presenting surgical options. CONCLUSION: This survey highlights the range of practice patterns in presenting surgical options to families and reveals possible discrepancies in the extent providers believe they use shared decision making and the extent it is actually used.