Anna R. Carlson

Pediatric cardiac surgery Parent Education Discharge Instruction (PEDI) program: a pilot study.

Background: In developing countries, more children with complex cardiac defects now receive treatment for their condition. For successful long-term outcomes, children also need skilled care at home after discharge. The Parent Education Discharge Instruction (PEDI) program was developed to educate nurses on the importance of discharge teaching and to provide them with a structured process for conducting parent teaching for home care of children after cardiac surgery. The aim of this pilot study was to generate preliminary data on the feasibility and acceptability of the nurse-led structured discharge program on an Indian pediatric cardiac surgery unit. Methods: A pre-/post-design was used. Questionnaires were used to evaluate role acceptability, nurse and parent knowledge of discharge content, and utility of training materials with 40 nurses and 20 parents. Retrospective audits of 50 patient medical records (25 pre and 25 post) were performed to evaluate discharge teaching documentation. Results: Nurses’ discharge knowledge increased from a mean of 81% to 96% (P = .001) after participation in the training. Nurses and parents reported high levels of satisfaction with the education materials (3.75-4 on a 4.00-point scale). Evidence of discharge teaching documentation in patient medical records improved from 48% (12 of 25 medical records) to 96% (24 of 25 medical records) six months after the implementation of the PEDI program. Conclusion: The structured nurse-led parent discharge teaching program demonstrated feasibility, acceptability, utility, and sustainability in the cardiac unit. Future studies are needed to examine nurse, parent, child, and organizational outcomes related to this expanded nursing role in resource-constrained environments.

Nasal Airway Dysfunction in Children with Cleft Lip and Cleft Palate: Results of a Cross-sectional Population-based Study, with Anatomical and Surgical Considerations.

Background: The aesthetic aspects of the cleft lip nasal deformity have been appreciated for over a century, but the functional implications have remained largely underappreciated or misunderstood. This study describes the frequency and severity of nasal obstructive symptoms among children with cleft lip and/or cleft palate, addressing the hypotheses that age, cleft type, and severity are associated with the development of nasal obstructive symptoms. Methods: Children with nonsyndromic cleft lip and/or cleft palate and a comparison group of unaffected children born from 1997 to 2003 were identified through the North Carolina Birth Defects Monitoring Program and birth certificates. Nasal airway obstruction was measured using the validated Nasal Obstruction Symptom Evaluation scale. Results: The survey was completed by parental proxy for 176 children with cleft lip and/or cleft palate and 333 unaffected children. Nasal obstructive symptoms were more frequently reported in cleft lip with cleft palate compared with unaffected children (p < 0.0001); children who had isolated cleft lip with or without alveolus and isolated cleft palate were not statistically different from unaffected children. Patients with unilateral cleft lip with cleft palate were found to be more severely affected than bilateral cases. Nasal obstruction was observed in early childhood, although severity worsened in adolescence. Conclusions: This population-based study reports a high prevalence of nasal obstructive symptoms in children with cleft lip and/or cleft palate based on type and severity of the cleft. The authors encourage cleft teams to consider using this or similar screening methods to identify which children may benefit from functional rhinoplasty. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, I.

A Population-Based Exploration of the Social Implications Associated with Cleft Lip and/or Palate

Background: Clefts of the lip and/or palate (CL/P) carry a social stigma that often causes psychosocial stress. The purpose of this study was to consider the association of cleft phenotype and age with self-reported aspects of psychosocial stress. Methods: Children with nonsyndromic CL/P and unaffected children born between 1997 and 2003 were identified through the North Carolina Birth Defects Monitoring Program and North Carolina birth records, respectively. The psychosocial concerns of children with CL/P were assessed via a 29-question subset of a larger survey. Responses were analyzed according to school age and cleft phenotype (cleft lip with/without cleft alveolus, CL ± A; cleft palate only, CP; or cleft lip with cleft palate, CL + P). Results: Surveys were returned for 176 children with CL/P and 333 unaffected children. When compared with unaffected children, responses differed for CL ± A in 4/29 questions, for CP in 7/29 questions, and for CL + P in 8/29 questions (P < 0.05). When stratified by school age, children with CL/P in elementary, middle, and high school differed from unaffected children by 1/29, 7/29, and 2/29 questions, respectively. Middle school–aged children with CL/P were more affected by aesthetic concerns, bullying, and difficulties with friendship, and social interaction. Children with CL + P reported more severe aesthetic-related concerns than children with CL ± A or CP but experienced similar speech-related distress as children with CP only. Conclusion: Social implications associated with CL/P are most pronounced during middle school, and less so during elementary and high school. This information identifies areas of social improvement aimed at reducing the stigma of CL/P.

Long-Term Clinical and Holistic Outcomes in Children with Cleft Lip and/or Palate: A Multidisciplinary, Mixed-Methods Approach.

RESULTS: The survey response rate was 15% (745 total respondents.) 314 surgeons traveled on a volunteer trip in the last 5 years. Adherence to VIPS guidelines on follow up of patients and general record keeping was robust with 97.9% reporting follow up by US and/or local providers and 98.9% of surgeons keeping medical records (282). 22.1 % (64) of surgeons volunteering recently reported being on a trip during their career where a patient died or suffered a life threatening complication. 7% (22) of surgeons responded that they had been on more than one such trip. Other indications of variable clinical quality included 7% of surgeons (21) answering that on their last trip, a nurse, general physician or surgeon provided general or monitored anesthesia. While patients under the age of 12 were most commonly operated on, only 25.9% (75) of surgeons said that pediatric anesthesiologists provided general anesthesia. Surgeons most commonly performed cleft surgery on their last trip, 54% (150), though 41.1% (113) identified their primary area of surgery in the US as general reconstructive and 29.5% (81) as cosmetic. 28% (75) of surgeons reported that they hold advanced training in craniofacial surgery or pediatric plastic surgery. These clinical quality and outcomes measures will also be reviewed in the presentation for surgeons who traveled with large volunteer groups, including Operation Smile and Resurge.

Implementation of a Standardized Data-Collection System for Comprehensive Appraisal of Cleft Care:

Objective: Our objective is to describe the process of adapting a conceptual framework into a practical toolkit for one cleft team. Design: This is a single-arm implementation study in a single institution. Setting: Implementation took place at a mid-sized multidisciplinary clinic for patients with cleft lip and/or palate (CL/P) from urban/suburban and rural areas across North Carolina and neighboring states. Participants: Eligible participants were patients with CL/P from English-speaking families. Sixty patients entered and finished the study. Interventions: The implementation of a prospective data collection system based on the International Consortium for Health Outcomes Measurement (ICHOM) standard set of outcome measures for CL/P was accomplished in multiple stages. Patient- and clinician-reported forms and protocols for gathering data were created. Team members were trained and the system was tested; finally, the system was deployed. Main outcome measures: Success was appraised using the RE-AIM framework to assess reach, effectiveness, adoption, implementation, and maintenance. Results: Ninety-eight percent of patients and all team members agreed to participate. Ninety-four percent of required data were captured. Adaptations to friction points were made; specifically, visible reminders were affixed to charts, primary clinicians were required to assume data entry responsibility, and e-mail reminders were instituted. Development cost was US

Obstructive sleep apnea in children with cleft lip and/or palate: Results of an epidemiologic study

7707; average time cost per clinician was 21 min/wk. Conclusions: Conceptual frameworks for outcomes studies must be tailored to their environments; otherwise, they cannot be practically implemented and sustained. We present this process for a cleft team using the ICHOM standard set. The process may help other teams implement the standard set or other conceptual frameworks.

Reconstructive surgery and patients with spinal cord injury: Perioperative considerations for the plastic surgeon

Introduction: Children with cleft lip and/or palate are at increased risk of obstructive sleep apnea. The prevalence of obstructive sleep apnea in this population is unknown. The purpose of this study was to assess the frequency of obstructive symptoms and obstructive sleep apnea diagnosis in the cleft population. We hypothesized that obstructive symptoms present more frequently in children with orofacial clefts than unaffected children, and that frequency varies by cleft sub-type. Methods: Children with isolated cleft lip and/or palate and children without birth defects born 1997-2003 were identified through the North Carolina Birth Defects Monitoring Program and birth records, respectively. A survey assessed airway obstructive symptoms, clinical diagnosis of obstructive sleep apnea, and prior polysomnography. Results were analyzed by frequency distributions and chi-square statistics. Results: Obstructive symptoms were reported more frequently in cleft palate and cleft lip with palate than in cleft lip and unaffected children. Trouble sleeping and nighttime mouth breathing were reported in up to 37.9% of cleft palate and 45.5% of cleft lip and palate (p<0.05). There was no statistically significant difference between cleft lip and unaffected children. Obstructive sleep apnea was diagnosed in 6.3% of children with clefts and 0% of unaffected children (p<0.0001). Conclusions: This study demonstrates a high frequency of obstructive symptoms in patients with cleft palate and cleft lip and palate. More children presented with obstructive symptoms than were diagnosed with obstructive sleep apnea. These children should be monitored for obstructive sleep apnea with a low threshold for polysomnography. Correspondence to: Eileen Raynor, Division of Otolaryngology Head and Neck Surgery & Communication Sciences, Duke Children’s Hospital; Durham, NC, USA, E-mail: eileen.raynor@duke.edu

Abstract 119: Long-Term Satisfaction in Young Reduction Mammaplasty Patients

Abstract Background: Patients with spinal cord injury (SCI) requiring reconstructive surgery, particularly for pressure ulcers, are ubiquitous in Plastic and Reconstructive Surgery practices. Much of the current literature focuses on operative techniques, antibiotic indications, sitting protocols, and dressing and bedding choices. Methods: This paper reviews normal neuroanatomy, outlines changes in neurophysiology observed in spinal cord injury, and addresses concepts related to perioperative care that are highly relevant but often under-emphasised. Results: Vascular disturbances such as autonomic dysreflexia and orthostatic hypotension are dangerous phenomena occurring in this patient population that, if not properly recognised and treated, may result in complications such as haematoma, flap loss, inadequate tissue perfusion, and death. The management of spasticity, deep venous thrombosis, and perioperative pain are also relevant and discussed in this paper. Conclusion: A basic understanding of these concepts is essential for the Plastic Surgeon involved in the care of patients with SCI and pressure ulcers, particularly before and after debridement or reconstruction.