Todd C. Edwards

Adolescent Well-Being in Washington State Military Families

OBJECTIVES We examined associations between parental military service and adolescent well-being. METHODS We used cross-sectional data from the 2008 Washington State Healthy Youth Survey collected in public school grades 8, 10, and 12 (n = 10,606). We conducted multivariable logistic regression analyses to test associations between parental military service and adolescent well-being (quality of life, depressed mood, thoughts of suicide). RESULTS In 8th grade, parental deployment was associated with higher odds of reporting thoughts of suicide among adolescent girls (odds ratio [OR] = 1.66; 95% confidence interval [CI] = 1.19, 2.32) and higher odds of low quality of life (OR = 2.10; 95% CI = 1.43, 3.10) and thoughts of suicide (OR = 1.75; 95% CI = 1.15, 2.67) among adolescent boys. In 10th and 12th grades, parental deployment was associated with higher odds of reporting low quality of life (OR = 2.74; 95% CI = 1.79, 4.20), depressed mood (OR = 1.50; 95% CI = 1.02, 2.20), and thoughts of suicide (OR = 1.64; 95% CI = 1.13, 2.38) among adolescent boys. CONCLUSIONS Parental military deployment is associated with increased odds of impaired well-being among adolescents, especially adolescent boys. Military, school-based, and public health professionals have a unique opportunity to develop school- and community-based interventions to improve the well-being of adolescents in military families.

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.

Patient-reported respiratory symptoms in cystic fibrosis

BACKGROUND Cystic fibrosis (CF) specific patient-derived and reported symptom tools are critical steps toward evaluating the outcomes of new therapies for CF. METHODS We conducted 25 in-depth qualitative interviews using the Day Reconstruction Method and 9 cognitive interviews at two CF programs, the University of Washington and Seattle Childrens Hospital and Regional Medical Center. The interviews were audio-recorded and transcribed, and then coded and analyzed for themes relating to pulmonary symptoms and related psychosocial impacts. RESULTS Six pulmonary symptoms were identified as central to CF: cough, sputum production, wheeze, chest tightness, difficulty breathing/shortness of breath, and fever. Emotional impacts included frustration, sadness/depression, irritability, worry, difficulty sleeping; while activity impacts included time spent sitting or lying down, reduction of usual activities, and missing school or work. In all, 8 symptom items, 4 emotional impacts items, and 4 activity impacts were selected for inclusion on a new daily diary. We also assessed triggers for seeking care. CONCLUSIONS Using a qualitative inductive methodology, we have obtained patient centered data regarding pulmonary symptoms and burdens and have created a novel patient reported outcome measure for CF. Future studies will assess the validity of the instruments.

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 Childrens 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.

Measuring the quality of life of youth with facial differences.

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.S. sites and one U.K. site. Eligible youth were aged 11 to 18 years, had a noticeable facial difference, could read at the fifth-grade level, and, for youth with facial burns, were at least 2 years posttrauma. Measures: Included were the newly developed YQOL-FD, the generic Youth Quality of Life Instrument, the Childrens Depression Inventory, and demographics. Results: Principal components analysis showed five significant factors that closely matched the domain structure hypothesized a priori. Domain scores of the YQOL-FD showed acceptable internal consistency and reproducibility. Scores were more strongly correlated with the Childrens Depression Inventory score than with self-rating of health as predicted. All domain scores showed adequate discrimination among levels of general quality of life (Wilks λ = 0.84, p = .001). The median time to complete the module was 10 minutes. Discussion: The YQOL Facial Differences Module augmented information obtained from the generic YQOL measure by addressing specific concerns. The module was well received by youth and showed acceptable measurement properties for evaluating the perceived quality-of-life status of youth facial differences. Future use in longitudinal studies and clinical trials is anticipated to evaluate the ability to detect change.

Validation of the EQ-5D in a general population sample in urban China

PurposeTo evaluate the reliability and validity of the EQ-5D in a general population sample in urban China.MethodsThousand and eight hundred respondents in 18 communities of Hangzhou, China were recruited by multi-stage stratified random sampling. Respondents self-administered a questionnaire including the EQ-5D, the SF-36, and demographic questions. Test–retest reliability at 2-week intervals was evaluated using Kappa coefficient, the intraclass correlation coefficient. The standard error of measurement (SEM) was used to indicate the absolute measurement error. Construct validity was established using convergent, discriminant, and known groups analyses.ResultsComplete data for all EQ-5D dimensions were available for 1,747 respondents (97%). Kappa values were from 0.35 to 1.0. The ICCs of test–retest reliability were 0.53 for the EQ-5D index score and 0.87 for the EQ VAS score. The SEM values were 0.13 (9.22% range) and 4.20 (4.20% range) for the EQ-5D index and EQ VAS scores, respectively. The Pearson’s correlation coefficients between the EQ-5D and the SF-36 were stronger between comparable dimensions than those between less comparable dimensions, demonstrating convergent and discriminant evidence of construct validity. The Chinese EQ-5D distinguished well between known groups: respondents who reported poor general health and chronic diseases had worse HRQoL than those without. Older people, females, people widowed or divorced, and those with a lower socioeconomic status reported poorer HRQoL. Respondents reporting no problems on any EQ-5D dimension had better scores on the SF-36 summary scores than those reporting problems.ConclusionsThe Chinese version of the EQ-5D demonstrated acceptable construct validity and fair to moderate levels of test–retest reliability in an urban general population in China.

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 Childrens 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.

Bullying and Quality of Life in Youths Perceived as Gay, Lesbian, or Bisexual in Washington State, 2010

OBJECTIVES We examined the association between perceived sexual orientation (PSO), bullying, and quality of life (QOL) among US adolescents. METHODS We analyzed data from the 2010 Washington State Healthy Youth Survey collected in public school grades 8, 10, and 12 (n = 27,752). Bullying status was characterized as never bullied, bullied because of PSO, or bullied for other reasons. Survey-weighted regression examined differences in QOL, depressed mood, and consideration of suicide by bullying status. RESULTS Among male students, 14%, 11%, and 9% reported being bullied because of PSO in 8th, 10th, and 12th grades, respectively; and among female students, 11%, 10%, and 6%. In all gender and grade strata, being bullied because of PSO was associated with lower QOL scores and increased the odds of depressed mood or consideration of suicide. Moreover, the magnitudes of these associations were greater than for being bullied for other reasons. CONCLUSIONS Bullying because of PSO is widely prevalent and significantly affects several facets of youth QOL. Bully-prevention or harm-reduction programs must address bullying because of PSO.

Functional and Symptom Impacts of Pediatric Head and Neck Lymphatic Malformations Developing a Patient-Derived Instrument

Objective Lymphatic malformations cause significant symptoms and functional deficits. Patients seek care for functional and symptomatic effects of their disease, but current disease burden and treatment outcome measures focus primarily on anatomy and histopathology. The authors describe disease impacts reported by patients and parents as a step toward more comprehensive disease burden assessments. Study Design Cross-sectional. Setting Children’s hospital vascular anomaly clinic. Subjects and Methods Participants were recruited through a pediatric vascular anomaly clinic. A panel of senior pediatric otolaryngologists and an outcomes scientist developed interview questions based on clinical and research experience and available literature. The outcomes scientist conducted parent and adolescent interviews. The panel reviewed responses to define relevant items within functional domains. Participants rated impact on daily life for each domain. Results Thirty-one participants represented all 5 de Serres stages (mean [SD] age, 9 [6] years; n = 11 adolescents and 20 parents). Adolescents reported frequent sickness as the domain with greatest impact. Sleep was more affected in adolescents with higher stage lesions. Parents of younger children reported greatest impact on breastfeeding. For adolescents, lesion stage predicted perceived social stigma (controlling for age), whereas increasing age was associated with greater impact from swelling (controlling for stage). For parents, stage predicted breastfeeding impact (controlling for stage). Conclusion This is the first detailed assessment of patient- and parent-reported functional and symptomatic impacts of head and neck lymphatic malformations. Both adolescent patients and parents of younger children reported significant symptom and functional effects of this disease.

School placement and perceived quality of life in youth who are deaf or hard of hearing.

In the education of students who are deaf and hard of hearing (DHH), there is much debate about how placement affects educational outcomes and quality of life. This study examined the relationship between quality of life and educational placement that include and do not include other DHH youth. Participants included 221 DHH youth, ages 11-18 with bilateral hearing loss. Results showed that there were few differences in quality of life related to school placement (with age, gender, depression symptoms, and hearing level as covariates). For both participation and perceived stigma, there was an interaction between school placement and parent hearing status, with no single school placement showing the best results. DHH youth with hearing parents in schools specifically for DHH students scored lower than DHH with deaf parents in some domains (Participation and Perceived Stigma). When the DHH youth were compared with the general population, those in schools that included DHH students scored lower in some aspects of quality of life, particularly Self and Relationships. This study demonstrates that DHH students may not differ much in terms of quality of life across schools placements, but that there may be differences in subsets of DHH youth.