To Operate or Not to Operate? Reconstructive Surgical Burden and Quality of Life of Pediatric Patients with Facial Differences.

OBJECTIVE: The Craniofacial Condition Quality of Life Scale (CFC-QoL) was used to evaluate the relationship between surgical burden and quality of life (QoL). DESIGN: Patient-parent dyads completed the CFC-QoL which queries the following QoL domains: Bullying, Peer Problems, Psychological Impact, Family Support, Appearance Satisfaction, and Desire for Appearance Change. Stepwise multivariate linear regressions were performed for each QoL domain. SETTING: Urban tertiary care center. PATIENTS, PARTICIPANTS: Pediatric patients with facial differences, and their parents. INTERVENTION: Survey study. MAIN OUTCOME MEASURE(S): Demographic, diagnostic, and surgical characteristics were collected. Surgical burden was calculated as the standard deviation from the mean number of surgeries per diagnostic cohort. RESULT: Patients (N = 168) were majority female (57.1%) and Hispanic (64.3%). Diagnoses were cleft lip and/or palate (CLP,n = 99) or other craniofacial conditions (CFC,n = 69). Average patient age was 2.3 ± 5.6 years at first reconstructive surgery and 12.3 ± 3.4 years at study enrollment. Patients received an average of 4.3 ± 4.1 reconstructive surgeries.Worse Bullying was associated with higher surgical burden. Worse Peer Problems was associated with higher surgical burden, but only for children with non-CLP CFCs. Worse Family Support was associated with CFC diagnosis, female sex, and higher surgical burden. Worse Psychological Impact was associated with higher surgical burden. Worse Appearance Satisfaction was associated with younger age and with lower surgical burden. Greater Desire for Appearance Change was associated with older age, higher surgical burden, CLP diagnosis, female sex, and non-Hispanic ethnicity. Socioeconomic status did not predict QoL per patient self- or parent-proxy report. CONCLUSIONS: Higher surgical burden was associated with worse QoL outcomes in multiple domains.

Psychometric evaluation of the Multidimensional Health Locus of Control scales in English- and Spanish-speaking Hispanic Americans.

The English and Spanish versions of the Multidimensional Health Locus of Control scales have not been psychometrically evaluated for use with Hispanic Americans. Hispanic American adults (N = 436) completed the English (n = 210) or Spanish (n = 226) Multidimensional Health Locus of Control scales. A multiple-group confirmatory factor analysis did not support equivalent four-factor structures for Spanish- and English-speaking Hispanic Americans. Follow-up exploratory factor analyses of the 24 items supported an 18-item, four-factor structure for English-speaking Hispanic Americans and a 22-item, three-factor structure for Spanish-speaking Hispanic Americans. These results suggest caution when using the Multidimensional Health Locus of Control scales with Hispanic Americans.

Health-Related Quality of Life in Craniofacial Conditions: Concordance Between Child and Parent Reports.

INTRODUCTION: Craniofacial conditions (CFCs) profoundly influence health-related quality of life (HRQoL). In children with CFCs, patient-reported outcome measures have become an integral adjunct to more objective surgical outcome measures. Patient-reported outcome measures are designed to assess HRQoL domains. Few studies have evaluated parent and child agreement about HRQoL in the context of CFCs. The aims of this study were to explore the impact of CFCs on HRQoL domains in children and their parents and to determine whether patient and parent perspectives converge. METHODS: The Craniofacial Conditions Quality of Life Scale (CFC-QoL) is a newly developed 5-domain survey available in child self-report and parent report and in English- and Spanish-language versions. The 5 domains are the following: social impact, psychological function, physical function, family impact, and appearance impact. Children with CFCs (ages 7-21 years) and parents of children with CFCs were recruited via the craniofacial care team clinic at a major metropolitan children's hospital. All children and parents completed the CFC-QoL Scale in their preferred language of English or Spanish. Scale internal consistencies were calculated for child patients and parents, for English and Spanish versions. Scores on the 5 domains were compared for children and parents across English versus Spanish versions. RESULTS: For children with CFCs (N = 75), the sex was distributed almost equally. Patients were mostly Hispanic (69.3%), and their ages ranged from 7 to 21 years old (M = 13.2, SD = 3.62). The mean values for patient and parent scores were low, suggesting good HRQoL across all 5 domains. Pearson correlation coefficients were computed to explore the interrelationships between patient and parent report for each of the 5 CFC-QoL subscales. For the total sample, patient and parent scores were significantly and moderately positively correlated for all subscales. When analyzed separately based on sex, ethnicity, and diagnostic group, the correlation patterns were not identical to those found for the total sample. When analyzed separately for diagnostic group, there was less consistency in patterns, with patient-parent dyads showing different levels of agreement based on child's diagnostic grouping. CONCLUSIONS: Although there is substantial agreement between parents and patients when considered on a group level, there is moderate agreement between patients and parents when considered at the dyadic level, underscoring the importance of measuring and considering both perspectives.