Implementation of validated screening by using the Parents' Evaluation of Developmental Status was feasible in large, urban settings. Effectiveness was demonstrated via chart review documenting an increased rate of identification of developmental and behavioral concerns. Perceived obstacles, such as the time requirement, should not prevent widespread adoption of screening.
Objective
To develop a brief measure of oral health-related quality of life in children and demonstrate its reliability and validity in a diverse population.
Methods
We administered the initial 20-item POQL to children (Child Self-Report) and parents (Parent Report on Child) from diverse populations in both school-based and clinic-based settings. Clinical oral health status was measured on a subset of children. We used factor analysis to determine the underlying scales and then reduced the measure to 10 items based on several considerations. Multitrait analysis on the resulting 10-item POQL was used to reaffirm the discrimination of scales and assess the measure’s internal consistency and interscale correlations. We established discriminant and convergent validity with clinical status, perceived oral health and responses on the PedsQL and determined sensitivity to change with children undergoing ECC surgical repair.
Results
Factor analysis returned a four-scale solution for the initial items – Physical Functioning, Role Functioning, Social Functioning and Emotional Functioning. The reduced items represented the same four scales – two each on Physical and Role and three each on Social and Emotional. Good reliability and validity were shown for the POQL as a whole and for each of the scales.
Conclusions
The POQL is a valid and reliable measure of oral health-related quality of life for use in pre-school and school-aged children, with high utility for both clinical assessments and large-scale population studies.
Purpose
Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned.
Methods
We conducted focus groups with parents of children with developmental disorders enrolled in the Gene Partnership (GP), a genomic research repository that offers to return IRRs, to learn about their understanding of the GP, motivations for enrolling their children, and expectations regarding the return of IRRs.
Results
Parents hoped to receive IRRs that would help them better understand their children’s condition(s). They understood that this outcome was unlikely, but hoped that their children’s participation in the GP would contribute to scientific knowledge. Most parents wanted to receive all IRRs about their child, even for diseases that were severe and untreatable, citing reasons of personal utility. Parents preferred electronic delivery of the results and wanted to designate their preferences regarding what information they would receive.
Conclusion
It is important for researchers to understand participant expectations in enrolling in a research repository that offers to disclose children’s IRRs in order to effectively communicate the implications to parents during the consenting process.
This study suggests that both family and child characteristics play an important role in the early identification of ASD and that predictive variables may vary based on a child's age. Future research should help to elucidate this finding so that screening measures and policies aimed at early identification can target the most predictive factors.
Background: The aim of this study was to ascertain parental preferences for the return of genetic research results on themselves and their children and their choices for genetic research results to receive. Methods: A mail survey was sent to 6,874 families seen at Boston Children's Hospital. The survey included questions assessing the respondents' preferences regarding the types of result they wanted to receive on themselves and their children. Results: Most of the 1,060 respondents ‘probably' or ‘definitely' wanted to receive genetic research results about themselves (84.6%) and their children (88.0%). Among those who wanted to receive results, 83.4% wanted to receive all research results for themselves and 87.8% for their children. When questions about specific types of research results were combined into a composite measure, fewer respondents chose to receive all results for themselves (53.5%) and for their children (56.9%). Conclusion: Although most parents report a desire to receive all research results on a general question, almost half chose to receive only a subset of research results when presented with specific types of research results. Our findings suggest that participants might not understand the implications of their choice of individual research results to receive unless faced with specific types of results.
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