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Todd C Edwards

Publications and source records attributed to Todd C Edwards.

8 recordsLinked to original sources

Approaches to craniofacial-specific quality of life assessment in adolescents.

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. PATIENTS, PARTICIPANTS: Thirty-three in-depth interviews with adolescents (aged 11 to 18 years), one young adult interview (age 19 years), 14 in-depth interviews with parents, one young adult focus group, one parent focus group, and one panel of researchers and clinical professionals working in the field. RESULTS: Using the qualitative methodology, grounded theory, seven domains that adolescents with CFDs perceive are important to having a good QoL were found. Six of the domains (coping, stigma and isolation, intimacy and trust, positive consequences, self-image, and negative emotions) comprised the Youth Quality of Life Instrument-Facial Differences module. One other domain, surgery, was a salient issue for many of the youth, but not all, so it was made into a separate module, the Youth Quality of Life Instrument- Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery. CONCLUSIONS: Using an established qualitative methodology, two QoL modules specific to adolescents with CFDs were developed and are ready for psychometric validation. Potential uses of the instruments are discussed.

Adaptation, Psychological↗

Quality of life: how do adolescents with facial differences compare with other adolescents?

OBJECTIVE: Compare the quality of life (QOL) of youth living with visible facial differences (FDs) with youth living with a visible nonfacial difference (i.e., mobility limitations), an invisible difference (i.e., attention deficit/hyperactivity disorder), or no known difference. DESIGN: An observational study of perceived QOL among adolescents with FDs (n = 56), adolescents with no diagnosed chronic condition (NCC, n = 116), adolescents with mobility limitations (ML, n = 52), and adolescents with attention deficit/hyperactivity disorder (ADHD, n = 68). PARTICIPANTS: Adolescents ages 11-18 years with FDs recruited through Children's Hospital, Seattle, Washington, participated in this study. Comparison groups were from a previous study of QOL among youth with and without chronic conditions. MAIN OUTCOME MEASURES: The main outcome measure was the Youth Quality of Life Instrument-Research Version, a generic instrument that assesses both perceptual and contextual aspects of QOL in four domains: Sense of Self, Relationships, Environment/Culture, and General Quality of Life. RESULTS: A MANCOVA adjusting for age, gender, and depressive symptomatology revealed that adolescents with FDs, on average, reported significantly lower overall QOL than did the NCC group. Their domain scores were similar to those of the other chronic conditions groups on all but the relationship domain. Reviewing the constituent items of the relationship domain revealed that adolescents in the ML and FDs groups reported higher scores than either the NCC group or the ADHD group on the relationship variables concerning family. CONCLUSIONS: Adolescents with facial differences confront significant challenges to their own self-identity while experiencing higher QOL from relationships, possibly from their need to negotiate and maintain close family support.

Adolescent↗

Quality of life of adolescent males with attention-deficit hyperactivity disorder.

Most psychosocial research on attention-deficit/hyperactivity disorder (ADHD) has focused on deficits in school, family, or behavioral functioning without incorporating perceived quality of life (QoL) or the adolescents' perspective. The Youth Quality of Life Instrument--Research Version (YQOL-R), was used to assess self-perceived QoL in a community sample of adolescents aged 11-18 years. Fifty-five adolescent males with a clinical diagnosis of ADHD were compared to a group of 107 adolescents with no chronic conditions (NCC) and a group of 52 adolescents with mobility impairments (MI). The adolescents with ADHD reported significantly lower perceived QoL scores, particularly in the Self and Relationship domains, than the NCC group. Their scores were similar to those from the group with MI, a group previously shown to have a substandard QoL. Interventions to improve self-esteem and social interactions might use QoL outcomes in evaluating effectiveness.

Adolescent↗

Protein expression arrays for proteomics.

As biology approaches the 50th year of deciphering the DNA code, the next frontier toward understanding cell function has protein biochemistry in the form of structural and functional proteomics. To accomplish the needs of proteomics, novel strategies must be devised to examine the gene products or proteins, emerged as en masse. The authors have developed a high-throughput system for the expression and purification of eukaryotic proteins to provide the resources for structural studies and protein functional analysis. The long-term objective is to overexpress and purify thousands of proteins encoded by the human genome. This library of proteins--the human proteome--can be arrayed in addressable format in quantities and purities suitable for high-throughput studies. Critical technology involved in efficiently moving from genome to proteome includes parallel sample handling, robust expression, and rapid purification procedures. Automation of these processes is essential for the production of thousands of recombinant proteins and the reduction of human error.

Animals↗

Quality of life of adolescents with perceived disabilities.

OBJECTIVE: To compare the self-perceived quality of life (QoL) of adolescents with and without disabilities. METHOD: A school-based survey was conducted with 2801 7th to 12th grade students in a rural area of the United States. The Youth Quality of Life Instrument-Surveillance Module and the Youth Quality of Life Group-Disability Screener were completed. RESULTS: Twenty-one percent of all students surveyed reported having one or more physical, emotional, or learning disabilities. Adolescents with disabilities reported lower QoL than adolescent without disabilities. However, self-rated health, depressive symptoms, and contextual variables were significant covariates in the relationship between disability and QoL. CONCLUSIONS: These findings suggest channels to improve the QoL of adolescents with disabilities. Specifically, reducing social and environmental barriers to promote inclusion of adolescents with disabilities in school, family, and community activities is one practical avenue for reducing disparities in QoL.

Adolescent↗

Adolescent quality of life, part I: conceptual and measurement model.

Few quality of life instruments exist that focus on the positive aspects of adolescence, incorporate adolescents' perspectives and language, and apply to both general and vulnerable populations. With these goals in mind, a conceptual and measurement model was developed using inductive qualitative methods to guide construction of the Youth Quality of Life Instrument-Research Version (YQOL-R). A conceptual model with four domains-Sense of Self, Social Relationships, Environment, and General Quality of Life-is reported.

Adolescent↗

Adolescent quality of life, part II: initial validation of a new instrument.

The psychometric properties of the Youth Quality of Life Instrument-Research Version (YQOL-R) perceptual module are presented. Self-reports were obtained from 236 youth aged 12-18 years with mobility disability, attention-deficit hyperactivity disorder, or without self-reported chronic conditions. Item and factor analyses confirmed the hypothesized conceptual model derived from previous qualitative research. The scales of the YQOL-R showed acceptable internal consistency (Cronbach's alpha=0.77-0.96), reproducibility (ICCs=0.74-0.85), expected associations with other constructs, and ability to distinguish between known groups. The YQOL-R showed sufficient validity to encourage further use.

Adolescent↗

Toward youth self-report of health and quality of life in population monitoring.

This paper addresses population monitoring of youth health and quality of life, including the concepts used, methodological and practical criteria for indicators, and existing surveys and measures. Current population surveys of youth generally focus on poor health, such as disability or health-risk behaviors. Although these are important end points, indicators of illness or risk do not reflect the health or life perspective of the majority of youth who do not experience health problems. The measures used to monitor youth health should be appropriate and sensitive to future needs and capture the perspectives of youths. Two potential concepts for this "scorecard" are self-perceived health and quality of life, which have been shown to be useful in adults. For youth, the quality of life framework seems particularly relevant as it incorporates both positive and negative aspects of health and well-being and also captures salient aspects of health other than physical health, such as sense of self, social relationships, environment and culture, and life satisfaction.

Adolescent↗