Objective: To evaluate the sensitivity to change of daily ratings of the comfort (COMF) and behavioral/emotional health (BEH) domains of the Infants with Clefts Observation Outcomes Instrument (iCOO) at 3 time points, and to assess the association of post-surgical interventions on iCOO ratings.
Design: The COMF and BEH domains were completed by caregivers before (T0), immediately after (T1), and 2-months after (T2) cleft lip (CL) surgery. Analyses included descriptive statistics, correlations, -tests, and generalized estimating equations.
Caregiver and observer-reported measures are frequently used as outcomes for research on infants and young children who are unable to report on their own health. Our team developed the Infant with Clefts Observation Outcomes Instrument (iCOO) for infants with cleft lip with or without cleft palate. This exploratory study compared test-retest and interrater reliabilities to inform whether differences in caregiver perspective might affect the iCOO.
View Article and Find Full Text PDFObjective: We evaluated the measurement properties for item and domain scores of the Infant with Clefts Observation Outcomes Instrument (iCOO).
Design: Cross-sectional (before lip surgery) and longitudinal study (preoperative baseline and 2 days and 2 months after lip surgery).
Setting: Three academic craniofacial centers and national online advertisements.
Objective: To develop an outcomes instrument that assesses observations that can be reliably reported by caregivers and can be used to assess health of infants with a cleft lip or cleft lip and cleft palate (CL±P) and impacts of treatments.
Design: Cross-sectional, mixed methods study.
Setting: Caregivers and health-care providers were recruited from 3 academic craniofacial centers and national advertisements.
Objective: Psychosocial issues associated with craniofacial diagnoses and the ongoing burden of care can impact the quality of life of patients and families, as well as treatment adherence and outcomes. Utilizing available literature and clinical expertise across 6 centers, the present article summarizes key psychosocial issues for the benefit of nonmental health medical providers and offers suggestions as to how all members of craniofacial teams can promote positive psychosocial outcomes.
Results: Family adjustment across developmental phases is outlined, with strategies to support adaptive parental coping.
J Craniofac Surg
September 2010
Working with child patients and their families in the practice of plastic and reconstructive surgery is rewarding and risky. Technical training is understandably intensive. However, the importance of the work that is needed before an operation does not always attract the same attention.
View Article and Find Full Text PDFObjective: To determine whether raters' first impressions of youth with craniofacial differences are modifiable.
Design: Observational study of the association between first impressions and social skills as related to youth aged 11 to 18 years with craniofacial differences.
Setting: University research offices and clinics.
Cleft Palate Craniofac J
September 2007
Objective: To describe the Facial Differences Module of the Youth Quality of Life Instruments (YQOL-FD) and present results evaluating domain structure, internal consistency, reproducibility, validity, and respondent burden.
Design: A multisite observational study of youth aged 11 to 18 years with acquired or congenital facial differences.
Participants: Three hundred seven youth recruited through clinics at four U.
Cleft Palate Craniofac J
January 2005
Objective: To ascertain the domains that adolescents aged 11 to 18 years with congenital and acquired craniofacial differences (CFDs) consider important to their quality of life (QoL) to create a craniofacial-specific module.
Design: Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs.
Setting: The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington.
Cleft Palate Craniofac J
March 2002
Objectives: Prenatal testing and information is available on an increasing basis for a variety of reasons. There are conflicting standards of care in the delivery of this type of evaluation and even more confusion around access to such services. As physicians and patients evaluate which tests will generate useful information with acceptable levels of risk, the rules of the game constantly shift.
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