Management of Velopharyngeal Insufficiency in Cleft Patients With and Without Multidisciplinary Team Care.

OBJECTIVE: To evaluate the effect of an American Cleft Palate-Craniofacial Association (ACPA)-approved multidisciplinary team on velopharyngeal insufficiency (VPI) diagnosis and treatment. DESIGN: Retrospective cohort setting; tertiary children's hospital patients; children with cleft palate repair identified through procedure codes. MAIN OUTCOME MEASURES: Velopharyngeal insufficiency diagnosis was assigned based on surgeon or team assessment. Age at diagnosis and surgery was recorded. Difference in age and rate of VPI diagnosis and surgery was analyzed with t test. Multivariate linear and logistic regression adjusted for confounding variables. RESULTS: Nine hundred forty patients were included with 71.5% cared for by an ACPA-approved multidisciplinary team. More (38.8% ) team care patients were found to have a diagnosis of VPI in comparison to 10% in independent care (P < .001). Team care was associated with an almost 6-fold increase in VPI diagnosis (P < .001). Team care was associated with a higher proportion of speech surgery (21% vs 10%, P < .001). Among children receiving team care, each visit was associated with 25% increased odds of being diagnosed with VPI (P < .001) and 20% increased odds of receiving speech surgery (P < .001). Age at VPI diagnosis and speech surgery were similar between groups (P = .55 and .29). DISCUSSION: Team care was associated with more accurate detection of VPI, resulting in more VPI speech therapy visits and surgical management. A higher number of team visits were similarly associated. CONCLUSION: Further studies of the clinical implication of timely and accurate VPI diagnosis, including quality of life assessments, are recommended to provide stronger guidance on team visit and evaluation planning.

Increased Risk of Velopharyngeal Insufficiency in Patients Undergoing Staged Palate Repair.

OBJECTIVE: To evaluate the association of 2-stage cleft palate (CP) surgery on velopharyngeal insufficiency (VPI) incidence, speech surgeries, and cleft-related surgical burden. DESIGN: Retrospective cohort with follow-up of 4 to 19 years. SETTING: Academic, tertiary children's hospital. PATIENTS: Patients who underwent CP surgery between 2000 and 2017. Exclusions included submucous CP or age at last contact under 3.9. INTERVENTIONS: Cleft palate surgery, completed in either a single-stage or 2-stage repair. MAIN OUTCOME MEASURE(S): Rates of VPI diagnosis and speech surgery and total cleft surgeries; t tests, tests of proportion, and linear and logistic regression were performed. Total cleft-related surgeries were examined in a subset (n = 418) of patients with chart reviews. RESULTS: A total of 1047 patients were included; 59.6% had 2-stage CP repair, 40.4% had single-stage repair. Approximately 32% of children with 2-stage CP repair were diagnosed with VPI, as opposed to 22% of single-stage patients (P < .001). Children with 2-stage CP repair were 1.8 times as likely to be diagnosed with VPI (P < .001). Speech surgery rates were similar across groups. Patients who had 2-stage repair received an average of 2.3 more cleft-related procedures, when excluding prosthesis management procedures. CONCLUSION: Our data show an increased risk of VPI diagnosis and increased surgical burden among patients receiving 2-stage CP repair.

Pediatric tracheostomy: timing of the first tube change.

OBJECTIVES: No consensus exists on appropriate timing for the first tracheostomy tube change. The purpose of this study is to evaluate the safety of early tracheostomy change in the pediatric population. METHODS: A case series of all children undergoing tracheostomy at a tertiary children's hospital between 2008-2013 was retrospectively reviewed. RESULTS: A total of 151 children undergoing tracheostomy were identified. The average age was 48.1±66 months and median age was 10 months. The initial tracheostomy tube change occurred on postoperative day 3 (POD 3) in 65 children (43.0%) safely without any complications. CONCLUSIONS: Early tracheostomy tube change was safely performed in a significant portion of this population. Routine tube change on POD 3 in many children could save resources by reducing the length of ICU and hospital stays.

Long-term Outcomes of Vocal Fold Paralysis Following Patent Ductus Arteriosus Ligation in Neonates.

INTRODUCTION: In patients undergoing patent ductus arteriosus (PDA) ligation there is a significant risk of left vocal fold paralysis (LVFP) particularly in premature neonates who are small for gestational age. The objective of this study is to determine the incidence of LVFP in infants following PDA ligation and report on long-term outcomes in patients with LVFP. METHODS: We performed a prospective study of patients undergoing PDA ligation in the newborn intensive care unit (NICU) between April 2004 and May 2014. Following PDA ligation, flexible laryngoscopy was performed to assess vocal fold mobility. Patients were then followed longitudinally to determine long-term outcomes. RESULTS: A total of 163 infants underwent PDA ligation. Thirty-six patients (22%) developed LVFP following the procedure. Twenty-five percent of neonates <1500 g experienced LVFP versus 5% of patients >1500 g (p = 0.033). Patients with LVFP were more likely to require a feeding tube (64% vs. 19.6%; p < 0.05) and spent more time in the NICU (135 days vs. 106 days; p < 0.05). Twenty-four patients received long-term follow-up. Six (25%) had complete resolution of LVFP, 10 (42%) were compensated, and 8 (33%) demonstrated persistent LVFP with no improvement. CONCLUSIONS: The incidence of LVFP after PDA ligation is high especially in extremely low birth weight children. The majority of patients recovered well with time, but further surgical intervention was required in uncompensated cases. Long-term follow-up of these patients is needed to ensure improvement. Laryngoscope, 133:1257-1261, 2023.

Comprehensive management of anterior drooling: An International Pediatric Otolaryngology Group (IPOG) consensus statement.

OBJECTIVE: To provide guidance for the comprehensive management of children referred for anterior drooling. The mission of the International Pediatric Otolaryngology Group (IPOG) is to develop expertise-based recommendations for the management of pediatric otolaryngologic disorders with the goal of improving patient care. METHODS: Survey of expert opinion by the members of the International Pediatric Otolaryngology Group (IPOG). The recommendations are derived from current expert consensus and critical review of the literature. RESULTS: Consensus recommendations include initial care and approach recommendations for health care providers who commonly evaluate children with drooling. This includes evaluation and treatment considerations for commonly debated issues in drooling management, initial work-up of children referred for anterior drooling, treatment recommendations, indications and contra-indications for rehabilitation, medical, and surgical management, as well as pros and cons of different surgical procedures in the hands of drooling management experts. CONCLUSION: Anterior drooling consensus recommendations are aimed at improving patient-centered care in children referred for sialorrhea.

Emotional Adjustment in Children with Vocal Fold Nodules.

INTRODUCTION: Vocal fold nodules (VNs) in children are benign, bilateral, callous-like lesions at the junction of the anterior third and posterior two-thirds of the true vocal folds. Chronic, repetitive, and intense vocal behavior is often cited as the primary etiology; however, difficulties with emotional adjustment may predispose some children towards extreme and possibly phonotraumatic vocal activity, thereby contributing secondarily to the development of VNs. OBJECTIVES: This case-control study examined the association between features of emotional adjustment and VNs in children. METHODS: Parents of children with VNs (N = 40, Mage = 7.5, SDage = 2.03) and two medical control groups [ie, voice disordered, but not VNs (VDCs; N = 40, Mage= 7.09, SDage = 2.01) and vocally normal controls (VNCs; N = 40, Mage = 7.6, SDage = 1.54)] participated in the study. Features of emotional adjustment were assessed using two inventories: the Parent Rating scale for Reactive and Proactive Aggression and the Revised Child Anxiety and Depression Scale - Parent version. RESULTS: As compared with the VNCs, children with VNs were significantly more aggressive (P = 0.042, Cohen's d = 0.47) whereas the VDCs were more depressed (P = 0.013, Cohen's d = 0.60). Furthermore, VDCs experienced more separation anxiety than VNs (P = 0.038, Cohen's d = 0.45) and VNCs (P = 0.021, Cohen's d = 0.55). No other significant between-group differences were identified between the VNs and VDCs. CONCLUSIONS: When present, elevated aggression may represent a risk factor for VNs formation in children, and possibly influence treatment outcomes. Therefore, the current results highlight the importance of understanding the role of emotional adjustment in the evaluation and treatment of dysphonia in children.

Customizable interdental splinting for repair of pediatric mandibular fractures in children with mixed dentition: A novel technique.

OBJECTIVE: Repair of pediatric mandibular fractures (PMFs) can be challenging due to the lack of permanent dentition for immobilization, and the presence of unerupted teeth and growth plates in the mandible limiting the space for fixation. Interdental splinting (IDS) has been advocated to provide temporary fixation without the need for mandibular plating; however, there is sparse description of the surgical methodology, and data on long term outcomes are even more limited. The aim of this study is to present our technique and outcomes using a novel technique for IDS repair of pediatric mandible fractures. STUDY DESIGN: Observational retrospective chart review. SETTING: Tertiary care pediatric hospital. SUBJECTS AND METHODS: Pediatric patients requiring operative repair for mandibular fracture at our tertiary care institution between 2004 and 2021 were included. Patients over 18 years of age, those who died due to associated injuries, or those who underwent non-IDS repairs were excluded. Subjects with at least 3 months of follow-up were assessed for efficacy of surgical repair and short-term adverse outcomes, and at least 1 year for long-term adverse events. Descriptive statistics were obtained. RESULTS: Twenty-three children were included in the study with an average age of 7.4 years (range 2-17 years). Fifty-two percent (52.2%) were female. The most common fracture site was the condyle, occurring in 16 children (70%). The indication for operative repair in all cases was malocclusion. The average duration of maxillomandibular fixation (MMF) with the novel IDS was 21 days (range 12-42 days). The average length of follow up was 1.6 years (range 3 months-11 years). All children had restored, functional occlusion at follow up with none requiring further orthodontic or dental intervention. Three children of the total cohort (13.0%) had prolonged hospitalization beyond 48 h for poor oral intake. Five children (21.7%) experienced minor long-term complications including persistent temporomandibular joint pain (n = 1, 4.3%), infection (n = 2, 8.7%), hypertrophic scar (n = 1, 4.3%) and exposure of hardware (n = 1, 4.3%). CONCLUSION: PMFs resulting in malocclusion are safely and effectively managed with operative repair utilizing a customizable IDS, with few observed short- and long-term complications.

Self-regulation in children with vocal fold nodules: A multilevel analysis.

INTRODUCTION: Vocal fold nodules (VNs) represent the most common cause of voice disorders in children. Phonotrauma related to chronic, repetitive, intense vocal activity is often cited as the proximate cause of VNs. However, diminished self-regulation (SR) may predispose some children toward extreme phonotraumatic voice use, thereby contributing secondarily to their development. This case-control study examined the association between features of SR and VNs in children. METHOD: Parents of children with VNs (N = 40, Age Mean = 7.5, SD = 2.03 years) and vocally normal, medical controls (VNCs; N = 40, Age Mean = 7.6, SD = 1.54 years) completed the Behavior Rating Inventory of Executive Function, Second Edition (BRIEF2; Gioia, Isquith, Guy & Kenworthy, 2015), an inventory that evaluates components of SR in children. RESULTS: Children with VNs, as compared with the vocally normal control group, were described as (i) impulsive (i.e., scoring significantly worse on the Behavior Regulation Index, BRI; P < 0.001, Cohen's d = 0.86), and (ii) emotionally dysregulated (i.e., scoring significantly worse on the Emotional Regulation Index, ERI; P < 0.001, Cohen's d = 0.81). CONCLUSIONS: Diminished SR in some children with VNs may contribute to phonotraumatic vocal behaviors and potentially attenuate the effectiveness of voice therapy.

Personality in Children With Vocal Fold Nodules: A Multitrait Analysis.

Purpose Vocal fold nodules (VNs) are bilateral, symmetrical, callous-like lesions secondary to phonotrauma and possibly related to specific personality traits. This case-control study examined the relation between personality and VNs in children within the context of the Trait Theory of VNs. Method Parents of children with VNs (N = 39, M = 7.43, SD = 2.01 years) and two medical control groups (i.e., voice disordered controls, but not VNs [VDCs; N = 40, M = 7.09, SD = 2.01 years] and vocally normal controls [VNCs; N = 40, M = 7.6, SD = 1.54 years]) completed the Inventory of Child Individual Differences, a personality instrument that describes the Big Five superfactors as well as 15 lower order personality traits. Results Children with VNs, as compared with VNCs, were (a) emotionally reactive (i.e., higher N-Neuroticism, p < .005, Cohen's d = 0.53), (b) Antagonistic, Strong-Willed, and less Compliant (i.e., lower A-Agreeableness, p < .014, Cohen's d = 0.59), and (c) Distractible and Disorganized (i.e., lower C-Conscientiousness, p < .009, Cohen's d = 0.62). Both voice disordered groups displayed elevated scores on the personality superfactor of Neuroticism (N; and the "Negative Emotions" lower order trait). Conclusions The combination of personality traits identified in this study (i.e., high N, low A and C) may play a central role in VNs development and possibly attenuate voice therapy success. Children with VNs displayed a similar personality typology as women with VNs, with the exception of elevated Extraversion (E), thereby providing support for the relevance of the Trait Theory of VNs in both children and adults. Clinicians treating children with voice disorders, including VNs, should consider their underlying personality traits in assessment and management.

International Pediatric Otolaryngology Group (IPOG) survey: Efforts to avoid complications in home tracheostomy care.

OBJECTIVE: To provide guidance for home care tracheostomy management in the pediatric population. The mission of the IPOG is to develop expertise-based recommendations for the management of pediatric otolaryngologic disorders with the goal of improving patient care. METHODS: Survey of expert opinion by the members of the International Pediatric Otolaryngology Group (IPOG). RESULTS: Survey results provide guidance for caregiver teaching, the reuse of tracheostomies and suction catheters while inpatient and following discharge, acceptable sterilization practices for tracheostomies, tracheitis workup and management, and outpatient follow-up practices. CONCLUSION: This presentation of common home tracheostomy care practices are aimed at improving patient-centered care in the pediatric population.

International Pediatric ORL Group (IPOG) Robin Sequence consensus recommendations.

OBJECTIVE: To provide recommendations for the comprehensive management of airway obstruction in patients with Robin Sequence. METHODS: Expert opinion by the members of the International Pediatric Otolaryngology Group (IPOG). RESULTS: The consensus statement provides recommendations for medical specialists who manage infants with Robin Sequence including: evaluation and treatment considerations for commonly debated issues in post-natal airway obstruction, assessment of antenatal obstruction and perinatal airway management. CONCLUSION: Consensus recommendations are aimed at improving management of airway obstruction in patients with Robin Sequence.

International Pediatric Otolaryngology Group (IPOG): Juvenile-onset recurrent respiratory papillomatosis consensus recommendations.

OBJECTIVES: To develop consensus recommendations for the evaluation and management of juvenile-onset recurrent respiratory papillomatosis (JORRP) in pediatric patients. METHODS: Expert opinion by the members of the International Pediatric Otolaryngology Group (IPOG). The mission of the IPOG is to develop expertise-based consensus recommendations for the management of pediatric otolaryngologic disorders with the goal of improving patient care. The consensus recommendations herein represent the first publication by the group. RESULTS: Consensus recommendations including diagnostic considerations, surgical management, systemic adjuvant therapies, postoperative management, surveillance, and voice evaluation. These recommendations are based on the collective opinion of the IPOG members and are targeted for otolaryngologists, primary care providers, pulmonologists, infectious disease specialists, and any other health care providers that manage patients with JORRP. CONCLUSIONS: Pediatric JORRP consensus recommendations are aimed at improving care and outcomes in this patient population.

International Pediatric Otolaryngology group (IPOG) consensus on the diagnosis and management of pediatric obstructive sleep apnea (OSA).

OBJECTIVE: To develop an expert-based consensus of recommendations for the diagnosis and management of pediatric obstructive sleep apnea. METHODS: A two-iterative Delphi method questionnaire was used to formulate expert recommendations by the members of the International Pediatric Otolaryngology Group (IPOG). RESULTS: Twenty-six members completed the survey. Consensus recommendations (>90% agreement) are formulated for 15 different items related to the clinical evaluation, diagnosis, treatment, postoperative management and follow-up of children with OSA. CONCLUSION: The recommendations formulated in this IPOG consensus statement may be used along with existing clinical practice guidelines to improve the quality of care and to reduce variation in care for children with OSA.

International Pediatric Otolaryngology Group (IPOG) consensus recommendations: Management of suprastomal collapse in the pediatric population.

INTRODUCTION: Suprastomal Collapse (SuStCo) is a common complication of prolonged tracheostomy in children. There is a paucity of literature on this subject, especially regarding how to manage significant suprastomal collapse that prevents safe decannulation. OBJECTIVE: Provide a definition, classification system, and recommend management options for significant suprastomal collapse in children with tracheostomy. METHODS: Members of the International Pediatric Otolaryngology Group (IPOG) who are experts in pediatric airway conditions were surveyed and results were refined using a modified Delphi method. RESULTS: Consensus was defined as > 70% agreement on a subject. The experts achieved consensus: CONCLUSION: This consensus statement provides recommendations for medical specialists who manage infants and children with tracheostomies with significant Suprastomal Collapse. It provides a classification system to facilitate diagnosis and treatment options for this condition.

Proposal for the surgical management of children with laryngeal saccular Cysts: A case series.

This case series aims to determine the optimal surgical approach for pediatric laryngeal saccular cysts. A retrospective chart review of patients who underwent surgical treatment for laryngeal saccular cysts was completed; 5 patients were diagnosed and surgically treated. Treatment approaches included aspiration, supraglottoplasty, injection of bleomycin, endoscopic subtotal resection (marsupialization with the laser or endoscopic instrumentation of the cyst), endoscopic extended subtotal excision (subtotal resection plus removal of false vocal fold with lasering or coblation of the inner cyst wall), and transcervical approaches for resection. Based on our outcomes, an endoscopic extended subtotal resection of the cyst will achieve the best outcomes for cysts confined to the larynx or for Type 1 cysts. A transcervical approach for resection of the cyst will achieve the best outcomes for Type 2 cysts that extend into the neck or are extralaryngeal.

Sleep disordered breathing and obstructive sleep apnea in the cleft population.

OBJECTIVES/HYPOTHESIS: Children with cleft deformities have the tendency for multilevel airway obstruction. The incidence of sleep disordered breathing (SDB) in this population has not been well studied. This study attempts to describe the high incidence and the results of intervention. STUDY DESIGN: A three-year retrospective chart review by a tertiary cleft and craniofacial team. METHODS: The symptoms of sleep disordered breathing and polysomnographic data were reviewed and analyzed using descriptive statistics and multivariate analysis. RESULTS: Of the 539 children seen during the period, 120 (22%) had symptoms suggestive of SDB. Twenty-four of them had a tonsillectomy with or without partial adenoidectomy without polysomnogram (PSG). Sixty-nine (57%) had a PSG, and 28 (40%) had a follow-up PSG. Syndromic children had significantly more symptoms of SDB (P < .001) and were more likely to undergo PSG (P < .05). Of those children who underwent a PSG, only six had a normal obstructive apnea-hypopnea index (OAHI) with a mean (+/-standard deviation) respiratory disturbance index (RDI) of 15.5 (+/-17.5) and OAHI of 12.05 (+/-15.57). Post intervention PSG showed significant improvement in RDI (P = .048) and OAHI (P = .012) using a single-tailed Wilcoxan analysis. Unfortunately, most of these children still had significant sleep apnea. There was also a high percentage of children with periodic leg motion syndrome (24.7%), some of whom also had OSA. CONCLUSION: There is a high incidence of SDB and definable OSA in the cleft population. Though there is a statistically significant improvement after intervention, some were not cured. Sleep disturbance and OSA is likely under-reported and treated in the cleft population. PSG should be done more frequently, and post intervention PSG should be strongly considered.

Perioral burns after adenotonsillectomy: a potentially serious complication.

OBJECTIVES: To evaluate an institutional experience with perioral burns after adenotonsillectomy and to survey the national experience of other pediatric otolaryngologists regarding this complication. DESIGN: A retrospective review of adenotonsillectomy cases from January 1, 1997, to December 31, 2005, was performed to determine the incidence, etiology, severity, and treatment of perioral burns. An online national survey of pediatric otolaryngologists was conducted in May 2006 to identify their experience with perioral burns. SETTING: A tertiary pediatric medical center. PARTICIPANTS: We evaluated cases with patients younger than 18 years who developed a perioral burn during an adenotonsillectomy or tonsillectomy at Primary Children's Medical Center, Salt Lake City, Utah. MAIN OUTCOME MEASURES: Institutional and national incidence, number of injuries per physician, technique used, severity of injury, and outcomes. Comparisons were made with respect to respondent experience and techniques used. RESULTS: Seven cases of perioral burn from a single institution were identified from 4327 procedures, with 1 injury requiring reconstructive surgery. The survey response rate was 101 of 298 invitations (33.9%). Sixty-one respondents reported a total of 124 perioral burns after adenotonsillectomy. Monopolar cautery was the most common technique associated with this injury (n = 84). Coblation was the second most common technique associated with perioral burns and represented 15 (12.1%) of the reported complications. A defective electrocautery device tip was the most commonly identified cause of burn (n = 25), followed by operator error (n = 13), conduction through a metal instrument (n = 8), and lack of insulation in a cautery device (n = 7). Coblation injury was attributed to direct heat transfer from the device shaft. No significant association with operator experience was noted. A total of 14 (11.3%) of the reported injuries were severe, resulting in the need for additional treatment. CONCLUSION: Perioral burns are an underreported complication of adenotonsillectomy that can result in severe long-term morbidity.

Systematic review/meta-analysis comparing successful outcomes after single vs. double-stage laryngotracheal reconstruction.

OBJECTIVE: To compare operation-specific decannulation rates between single-stage (SSLTR) and double-stage laryngotracheal reconstruction (DSLTR) when controlling for grade of airway stenosis. METHODS: A systematic review and meta-analysis were performed using PubMed, EMBASE and Cochrane databases from 1970 to 2015 to examine primary SSLTR and DSLTR for subglottic stenosis in patients 18 years or younger. Primary outcome was decannulation or extubation after LTR. Failures included patients not decannulated or requiring additional open airway procedures prior to decannulation. Only studies providing outcomes delineated by airway stenosis grade were included. Non-English language studies and case reports were excluded. RESULTS: There were 712 abstracts reviewed and 16 studies with 663 pooled patients included in the systematic review analysis. The metaanalysis included 5 studies. Overall, the operation-specific decannulation success was statistically significantly different between SSLTR [93.2% (N = 221)] and DSLTR [83.7% (N = 442)] (P<0.001). When controlling for stenosis severity, however, no difference was found in decannulation success between SS- or DSLTR except in the grade 3 group: Grade 1-100% (N = 6) vs. 100% (N = 6), (P = 1); Grade 2 - 84.9% (N = 106) vs. 83.3% (N = 138), (P = 0.72); Grade 3-80.2% (N = 101) vs. 69.7% (N = 238), (P = 0.03); Grade 4-33.3% (N = 6) vs. 50% (N = 58), (P = 0.67). CONCLUSION: No difference in decannulation rates was seen between SSLTR and DSLTR when comparing similar grades of stenosis except in grade 3 stenosis. With worsening stenosis, the success rate declines with both methods. Prospective studies with standardized enrollment criteria and reported outcomes are needed to better understand the advantages and disadvantages of each approach.

Predictors of complicated airway foreign body extraction.

OBJECTIVES: To evaluate outcomes of foreign body aspiration (FBA) and to investigate surgeon and hospital volume as risk factors for a complicated course. STUDY DESIGN: Retrospective case series. METHODS: Children with FBA in a multihospital network were identified from January 2005 to September 2015. Demographic information, surgeon, and hospital location were reviewed. Mean operative time and hospital length of stay were recorded. Cases requiring intensive care unit admission, hospital stay greater than 24 hours, need for more than one bronchoscopy, operative time greater than 1 hour, or death were considered "complicated." RESULTS: A total of 450 cases of airway foreign body extraction were performed. Patient ages ranged from 0.6 to 18.8 years, with a median age of 1.9 years. Bronchoscopy with foreign body extraction was performed by 55 different surgeons at 11 different facilities. There were one to 24 surgeons for each facility, with an average number of 5.4 surgeons per facility. A total of 88 (19.6%) cases were considered complicated, including five (1.1%) deaths. Increased rates of complications were seen with unwitnessed aspiration (P = 0.008) and hyperlucency (P < 0.001) or infiltrates (P = 0.001) on chest radiographs. No significant association was found between surgeon type or facility as related to a complicated case. CONCLUSIONS: Unwitnessed aspiration events and abnormalities on chest radiograph may be associated with a more complicated course in children with FBA. This multihospital study identified a low number of procedures by many surgeons; however, surgeon and hospital volume did not significantly correlate with higher complication rates. LEVEL OF EVIDENCE: 4. Laryngoscope, 128:490-495, 2018.

Quality of life in children with velopharyngeal insufficiency.

OBJECTIVE: To determine if quality of life (QOL) is affected in children with velopharyngeal insufficiency (VPI). DESIGN: Interview and survey. SETTING: Two university pediatric ambulatory centers. PARTICIPANTS: This population-based sample included 58 children, aged 5 to 17 years, and their parents; 29 of the children were diagnosed as having VPI and 29 were age-matched normal controls. INTERVENTION: Each participant (child and parent) completed 2 questionnaires: the Velopharyngeal Insufficiency Quality of Life (VPIQL), an instrument specifically designed for children with VPI, and the Pediatric Quality of Life Inventory, version 4.0 (PedsQL(4.0)), a standardized generic assessment instrument that systematically assesses the perception of health-related QOL in pediatric patients with chronic health conditions. MAIN OUTCOME MEASURES: The VPIQL questionnaire assessed patients' and parents' perceptions of speech, swallowing, situational and emotional difficulty, activity limitations, and perception of the patient by others. Caregiver impact was also assessed in the parent version of the VPIQL. RESULTS: The patients with VPI and their parents perceived a more statistically significant negative QOL compared with the normal controls and their parents in all domains of the VPIQL and the PedsQL(4.0). The parents of the children with VPI perceived a more negative emotional impact (P = .02), greater speech limitations (P = .05), and fewer swallowing problems (P<.001) compared with their children. CONCLUSIONS: Children with VPI and their parents perceive negative QOL greater than that of normal controls and their parents. Parental proxy may be an adequate substitute in this population.