Health-Related Quality of Life in Craniofacial Conditions

Abstract

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.

Psychosocial Burden of Pediatric and Adult Patients With Congenital Versus Traumatic Facial Differences

“…Nevertheless, our data do capture at least 1 year's worth of follow-up to provide insight on the short term effects of congenital versus acquired facial differences on mental health and utilization of healthcare resources. Data on the pediatric population were also inevitably collected by proxy, which may present perspectives different from that of patients themselves as described in previous studies 33–35 . However, these potential discrepancies were accounted for by keeping comparisons within each group (ie, self-reported variables were not compared with responses by proxy).…”

“…Data on the pediatric population were also inevitably collected by proxy, which may present perspectives different from that of patients themselves as described in previous studies. [33][34][35] However, these potential discrepancies were accounted for by keeping comparisons within each group (ie, self-reported variables were not compared with responses by proxy). Finally, there may be limitations inherent to survey-based databases such as recall bias or weighted design to extrapolate national figures from survey respondents.…”

Psychosocial Impact of Coronal Access Scars in Craniosynostosis Procedures on Patients and Their Families

“…There was a significant association between how noticeable parents and children felt the scar to be, but not how bothered they were by it. Recent studies comparing psychosocial functioning ratings of parents and child with craniofacial conditions found some discrepancies between the parent and child-reported outcomes, highlighting the importance of considering both perspectives in psychological assessments 25,26 …”

“…Recent studies comparing psychosocial functioning ratings of parents and child with craniofacial conditions found some discrepancies between the parent and child-reported outcomes, highlighting the importance of considering both perspectives in psychological assessments. 25,26 Anecdotally, some families commented during measurement of the scars in the study that they chose to cut or style the child's hair in a certain way to hide the scars, whereas many did not find it influenced their choices or daily lives. It is possible that families who had undergone such major surgery with a child at a young age, to correct an abnormal head shape and prevent complications such as raised intra-cranial pressure, felt that the resultant scarring was a relatively minor concern in comparison.…”

Virtual and In-Person Day Camps for the Craniofacial Community

“…The human face serves critical functions as the primary medium of communication, emotional connection, and social cueing 1 . Consequently, disfiguration of the face can impact psychosocial development and ability to interact with others 2 . This may lead to suboptimal interactions in social, academic, family, and career settings.…”