FACE-Q Craniofacial Module: Part 1 validation of CLEFT-Q scales for use in children and young adults with facial conditions.

BACKGROUND: The CLEFT-Q includes 12 independently functioning scales that measure appearance (face, nose, nostrils, teeth, lips, jaws), health-related quality of life (psychological, social, school, speech distress), and speech function, and an eating/drinking checklist. Previous qualitative research revealed that the CLEFT-Q has content validity in noncleft craniofacial conditions. This study aimed to examine the psychometric performance of the CLEFT-Q in an international sample of patients with a broad range of facial conditions. METHODS: Data were collected between October 2016 and December 2019 from 2132 patients aged 8 to 29 years with noncleft facial conditions. Rasch measurement theory (RMT) analysis was used to examine Differential Item Function (DIF) by comparing the original CLEFT-Q sample and the new FACE-Q craniofacial sample. Reliability and validity of the scales in a combined cleft and craniofacial sample (n=4743) were examined. RESULTS: DIF was found for 23 CLEFT-Q items when the datasets for the two samples were compared. When items with DIF were split by sample, correlations between the original and split person locations showed that DIF had negligible impact on scale scoring (correlations ≥0.995). In the combined sample, RMT analysis led to the retention of original content for ten CLEFT-Q scales, modification of the Teeth scale, and the addition of an Eating/Drinking scale. Data obtained fit with the Rasch model for 11 scales (exception School, p=0.04). Person Separation Index and Cronbach alpha values met the criteria. CONCLUSION: The scales described in this study can be used to measure outcomes in children and young adults with cleft and noncleft craniofacial conditions.

FACE-Q craniofacial module: Part 2 Psychometric properties of newly developed scales for children and young adults with facial conditions.

BACKGROUND: The FACE-Q Craniofacial Module is a patient-reported outcome measure designed for patients aged 8 to 29 years with conditions associated with a facial difference. In part 1, we describe the psychometric findings for the original CLEFT-Q scales tested in patients with cleft and noncleft facial conditions. The aim of this study was to examine psychometric performance of new FACE-Q Craniofacial Module scales. METHODS: Data were collected between December 2016 and December 2019 from patients aged 8 to 29 years with conditions associated with a visible or functional facial difference. Rasch measurement theory (RMT) analysis was used to examine psychometric properties of each scale. Scores were transformed from 0 (worst) to 100 (best) for tests of construct validity. RESULTS: 1495 participants were recruited with a broad range of conditions (e.g., birthmarks, facial paralysis, craniosynostosis, craniofacial microsomia, etc.) RMT analysis resulted in the refinement of 7 appearance scales (Birthmark, Cheeks, Chin, Eyes, Forehead, Head Shape, Smile), two function scales (Breathing, Facial), and an Appearance Distress scale. Person separation index and Cronbach alpha values met criteria. Three checklists were also formed (Eye Function, and Eye and Face Adverse Effects). Significantly lower scores on eight of nine scales were reported by participants whose appearance or functional difference was rated as a major rather than minor or no difference. Higher appearance distress correlated with lower appearance scale scores. CONCLUSION: The FACE-Q Craniofacial Module scales can be used to collect and compare patient reported outcomes data in children and young adults with a facial condition.

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.

Cosmetic surgery in the NHS: Applying local and national guidelines.

There is no worldwide consensus, as to how healthcare should be funded, in a modern society. Limited resources in the UK, have led to restrictions on cosmetic surgery in the NHS. Guidelines governing access to cosmetic surgery have been formulated. A retrospective audit has been undertaken, to assess adherence to local and national guidelines, in an NHS trust. Ninety-nine casenotes were reviewed over 1 year. Data on complications were collected. Compliance to local guidelines was 44% and to national guidelines was 22%. Complication rate was 23% in guideline compliant patients and 55% in non-compliant patients (P<0.005). Guidelines are difficult to follow in practice. Total adherence to guidelines would reduce waiting lists and complications, but some needy patients could be denied treatment. In practice, rigid adherence to guidelines is not possible.

Hair straighteners: a significant burn risk.

BACKGROUND AND AIM: Hair straighteners have become increasingly common household appliances. The purpose of this study was to investigate the temperatures reached by the exposed plates of hair straighteners when switched on, and the length of time taken to cool to a safe temperature after switching off. We also present the case of a child with deep dermal burns caused by a hair straightener, highlighting its potential danger when left unattended. METHODS: Eight different hair straighteners were tested using a calibrated thermometer. Maximum temperature reached and length of time taken to cool to 40 degrees C were recorded three times for each straightener. RESULTS: Among the eight straighteners tested, the size of the plates varied between 22.5 and 53.9cm(2). Plate material was ceramic in all but one case. Average maximum temperature was 163 degrees C (122-210 degrees C). Mean time taken to cool to 40 degrees C from switch-off was 26min (18-44min). None of the devices tested could be locked closed. DISCUSSION AND CONCLUSION: Hair straighteners present a significant risk of burn when left unattended, both while switched on and for up to 44min after turning off. We offer some recommendations to improve safety.