Online Cleft Educational Videos: Parent Preferences.

OBJECTIVE: Determine what parents of children with cleft lip and palate value in online educational videos and evaluate whether their needs are currently being met. DESIGN: Focus groups and telephone interviews were used to define parent information needs, followed by an evaluation of whether currently available YouTube videos meet these needs. SETTING: British Columbia Children's Hospital multidisciplinary cleft clinic. PARTICIPANTS: Twenty-four parents of children with nonsyndromic cleft lip and palate. RESULTS: Parents desired videos that are accessible, trustworthy, relatable, and positive. Parents preferred a series of short videos addressing relevant topics as their child grows. Currently available YouTube videos only partially met these needs, with underrepresented topics including hearing, dentition, and surgeries for older children. CONCLUSIONS: While access and validity of video resources can be improved by directing patients and families to appropriate videos, some parent needs remain unmet.

Experiences of Canadian Parents of Young Children With Cleft Lip and/or Palate.

PURPOSE: Prior literature has described the perspectives of parents of young children with clip lip and/or palate; however, few studies have described parents' experiences within a Canadian health care system. This study aims to better understand the experiences of parents of young children with cleft lip and/or palate seen at a Canadian tertiary care center and identify their care needs. DESIGN: In-depth semistructured interviews. SETTING: Pediatric tertiary care center. PARTICIPANTS: Parents of children younger than 7 years of age with cleft lip and/or palate. RESULTS: From 14 interviews, 4 themes were identified. The diagnosis theme was associated with reactions, timing, and search for information. Key concerns within the theme of physiology and function were around feeding and speech. The health care experience theme included burden of care, peripheral hospitals and services, the cleft lip and palate clinic, and clinicians. The psychosocial theme included parents' reactions to their child's pain, coping strategies, family interactions, and school/day care experiences. Parents felt care could be improved by having: access to good information and community speech therapists, shorter appointment wait times, a peer support network, and increased cleft knowledge within their child's school and peer groups. CONCLUSIONS: The experience of parents of children with cleft lip and/or palate is complex but can be organized into 4 themes. Clinics may consider suggestions offered by parents to improve care. Future work should address parents' needs and aim to create a parent-reported quality-of-life measure specific to parents of young children with cleft lip and/or palate.

A Review of Validated Quality-of-Life Patient-Reported Outcome Measures in Pediatric Plastic Surgery.

BACKGROUND: There has been an exponential increase in the number of patient-reported outcome measures in plastic surgery. The authors reviewed the reliability, validity, and practicality of the most frequently used patient-reported outcome measures in pediatric plastic surgery research. METHODS: A review of the literature from January of 2010 to June of 2015 was conducted to identify patient-reported outcome measures in pediatric plastic surgery. Patient-reported measures used in five articles with two validation studies were included for analysis and classified as generic, disease-specific, and mental health. The type of validation used and reliability scores were compared across each class of outcome measure. The practicality of each measure was determined by the frequency of use and the number of items and cost. RESULTS: Of the 173 unique patient-reported outcome measures identified, 14 were included for analysis and classified as generic (n = 7), disease-specific (n = 4), and mental health (n = 3). The majority of all measures used construct validity. Disease-specific measures had the highest distribution of domains related to physical functioning, the same domain also found to have the highest reliability scores. A patient-reported outcome measure's frequency of use was not associated with its number of items or cost. CONCLUSIONS: This review found that generic patient-reported outcome measures were used most often, construct validity was used most frequently, physical functioning domains had the highest reliability, and the number of items or cost of a patient-reported outcome measure was not related to its frequency of use. Considered together, this information may inform the future development or selection of patient-reported outcome measures in pediatric plastic surgery.

Image guided sclerotherapy for the treatment of venous malformations.

BACKGROUND: Percutaneous sclerotherapy is the preferred method of treatment for VMs (venous malformations). However, treatment protocols vary, and research on the most effective sclerosant is conflicting. Additionally, there is limited knowledge on the effect of sclerosant volume on treatment outcome. This study aims to determine the outcomes and complications of image-guided sclerotherapy for VMs with respect to sclerosant and sclerosant volume. Towards this, a 10-year retrospective chart review was conducted of patients with VMs treated with sclerotherapy at the Vascular Anomalies Clinic at British Columbia Children's Hospital. RESULTS: Thirty-four patients with VMs were treated of which 15 had a successful outcome, 13 had a failed outcome, and 6 had additional planned treatments after the study time period. Lesions on the head and neck or classified as type I or II had the highest success rates. Combination therapy with both ethanol and 3% STS (sodium tetradecyl sulphate), and ethanol alone had a higher success rate (64% and 60%) compared to 3% STS (11%). Major complications were most associated with 3% STS (17%) followed by ethanol (9%), and no major complications were found with combination. No relationship between the volume of sclerosant per lesion volume and outcome was found. CONCLUSIONS: Combination and ethanol were the most effective sclerosants in terms of highest success rates and lowest complication rates, and sclerosant volume per lesion volume had no effect on outcomes. Future work should aim at studying larger sample sizes to account for the multiple factors that may influence the choice of sclerosant and treatment outcomes.

Lymphatic Malformation Architecture: Implications for Treatment With OK-432.

PURPOSE: Herein, the authors aim to describe their findings of novel architectural types of lymphatic malformations (LM) and explain the relationship between these architectures and OK-432 treatment outcomes. METHODS: A retrospective review was conducted of all patients diagnosed with a LM treated with OK-432 at the Vascular Anomalies Clinic at BC Children's Hospital from December 2002 to January 2012. RESULTS: Twenty-seven patients were included in the study. Sixty percent of lesions were present by 2 years of age with the majority located in the head and neck (59%). The average number of sclerotherapy procedures was 1.4 per patient. Treatment under fluoroscopic guidance revealed 3 new LM architectures: open-cell microcystic, closed-cell microcystic, and lymphatic channel. Response to treatment was complete or good for 14/19 macrocystic and for 1/2 mixed lesions. Open-cell microcystic LMs gave a complete or good response for 3/3, which was attributed to OK-432 freely communicating between cysts. Closed-cell microcystic LM had localized cysts that did not allow OK-432 to freely communicate and were associated with partial responses, 2/2. The lymphatic channel had a partial response. There were 2 minor complications and 1 instance of recurrence. CONCLUSIONS: The identification of 3 new LM architectures expands the current accepted classification to include: open-cell microcystic, closed-cell microcystic, and lymphatic channels. The majority of complete responses to OK-432 were found with macrocystic lesions. Open-cell microcystic lesions respond better to OK-432 than closed-cell microcystic lesions, and lymphatic channels may respond to OK-432. These key architecture-response relationships have direct clinical implications for treatment with OK-432 sclerotherapy.

Just add tetrazole: 5-(2-pyrrolo)tetrazoles are simple, highly potent anion recognition elements.

We report a novel pyrrolo-tetrazole motif that encodes anion binding orders of magnitude stronger than closely related systems and suggests the general utility of amide-tetrazole exchanges for creating simple, high-affinity anion binders.

Recognition properties of carboxylic acid bioisosteres: anion binding by tetrazoles, aryl sulfonamides, and acyl sulfonamides on a calix[4]arene scaffold.

Tetrazoles and acyl sulfonamides are functional groups that are common in medicinal chemistry but virtually unexplored as recognition elements in supramolecular chemistry. We report here on the anion binding properties of these highly acidic N-H functional groups. We have prepared two new calixarene-based tetrazole-containing hosts, as well as new acetyl sulfonamide and benzoyl sulfonamide hosts. We also report on analogous hosts bearing the better-known aryl sulfonamide functional group as a point of comparison. We find that these hosts are competent anion binders and that the recognition of anions by these groups is highly dependent on their conformational preferences. We also report in detail on the preferred molecular shape of each acid bioisostere as determined by calculations and structural database surveys, and discuss how these shapes impact binding in the context of the reported hosts.