Correlates of health-related quality of life in youth with psychogenic non-epileptic seizures.

BACKGROUND: Few studies have examined factors associated with health-related quality of life (HRQoL) in youth with psychogenic non-epileptic seizures (PNES). In adults, internalizing symptoms such as depression have been shown to be more closely associated with HRQoL than seizure frequency, however, this has not been studied in samples of youth. Investigations into these areas are needed in order to enhance our understanding of the impact of this condition on children and adolescents and inform future clinical intervention. METHODS: The current study includes 37 youth and one of their parents who attended a clinic visit for treatment of PNES. Children and parents completed measures of psychological functioning, and medical data were extracted from patient charts. RESULTS: Parent-reported anxiety (B=-0.45, p = 0.05) and depression (B=-0.60, p = 0.01) were related to parent-report of HRQoL; self-report of depression was related to self-reported HRQoL (B=-0.90, p < 0.001). Seizure frequency, somatic complaints, and social problems were not related to HRQoL in this sample. CONCLUSIONS: Internalizing symptoms, not seizure frequency, are associated with poorer overall functioning in youth with PNES. Interventions focused on improving anxiety and depression in addition to seizure cessation may contribute to improved HRQoL in youth with PNES more so than those focused on seizure cessation alone.

Medical and psychosocial outcomes of youth with psychogenic nonepileptic seizures: An observational study.

BACKGROUND: Few studies have examined both medical and psychosocial outcomes of youth with psychogenic nonepileptic seizures (PNES). The current observational study aimed to fill this gap by examining changes in seizure frequency, school absences, emergency department (ED) visits, psychological functioning, and health-related quality of life (HRQoL) in youth attending a clinic for brief treatment of PNES. METHODS: Nineteen youth with PNES and their families presented to an integrated clinic and received psychoeducation and recommendations by medical and mental health professionals. Patients returned to the clinic, on average six months later, for follow-up. Parent proxy-report and self-report measures of psychological functioning and HRQoL were collected at each visit, and medical data were extracted from patient charts. RESULTS: Forty-six percent of youth in the study experienced a reduction in seizure frequency, and 58% reported improvements in school attendance. Emergency department visits decreased by over 50%, and significant improvements in parent proxy-report of depression and HRQoL were observed. CONCLUSIONS: Results provide valuable information regarding the clinical profiles of youth with PNES and demonstrate the possibility for improved medical and psychosocial prognoses in response to psychoeducation and treatment guidance. Information obtained in this study may aid in the design of future clinical trials and research, assisting in the development of appropriate interventions.

Male gender and unemployment are associated with lower levels of perceived social support in adults with cystic fibrosis.

OBJECTIVE: Adults with cystic fibrosis (CF) face unique challenges with regard to the attainment and maintenance of social support. Although social support has been shown to improve treatment outcomes in other patient-populations, research on social support in adults with CF is limited. In fact, no studies have examined factors associated with less perceived social support in this population. The current study aimed to fill this gap, thus providing CF care teams with empirical evidence about who may be most likely to lack support and inform future intervention. METHODS: Participants in this cross-sectional study included 233 adults with CF who were part of a larger, longitudinal study. Participants completed the Interpersonal Support Evaluation List, a measure of social support, and attended routine clinical visits where measures of disease severity were obtained. RESULTS: Being female and employed were associated with greater perceptions of social support in this sample. Age, income, education, marital status, and disease-severity were not related to perceptions of social support. CONCLUSION: The present study revealed that individuals with CF who are unemployed and those who are male perceived having lower social support, perhaps identifying subgroups for whom targeted interventions may be appropriate.

Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis.

BACKGROUND: Although social support has been linked to a variety of health outcomes in those with and without chronic illness, this construct has rarely been studied in adults with cystic fibrosis (CF), who may face a unique set of clinical and psychosocial barriers. The current study explored the relationships between social support, mental health, physical health, treatment activity, and disease-specific quality of life in a sample of adults with CF. METHODS: Participants in the study included 250 adults with CF who took part in a larger longitudinal study. Participants were administered a battery of measures including a social support evaluation (Interpersonal Support Evaluation List, ISEL), a health assessment (Memorial Symptom Assessment Scale, MSAS), a health-related quality of life measure (Cystic Fibrosis Questionnaire - Revised, CFQ-R), and treatment activity questionnaires (Tool for Adherence Behaviour Screening, TABS and other surveys). RESULTS: Linear regression analyses indicated that greater social support was associated with fewer self-reported mental and physical health symptoms, digestive symptoms, and eating disturbances over time. Social support also was associated with elevated emotional, social, and role functioning as well as vitality and improved body image. Those who reported more support perceived less treatment burden and better overall perceptions of their health. CONCLUSIONS: Social support has been shown to be associated with health outcomes in other chronic illnesses, and the same is true for adults with CF. This study fills gaps in the literature by examining outcomes of social support in this emerging adult population and providing a potential area for intervention.

Derivation and Evaluation of a Risk-Scoring Tool to Predict Participant Attrition in a Lifestyle Intervention Project.

Participant attrition in clinical trials and community-based interventions is a serious, common, and costly problem. In order to develop a simple predictive scoring system that can quantify the risk of participant attrition in a lifestyle intervention project, we analyzed data from the Special Diabetes Program for Indians Diabetes Prevention Program (SDPI-DP), an evidence-based lifestyle intervention to prevent diabetes in 36 American Indian and Alaska Native communities. SDPI-DP participants were randomly divided into a derivation cohort (n = 1600) and a validation cohort (n = 801). Logistic regressions were used to develop a scoring system from the derivation cohort. The discriminatory power and calibration properties of the system were assessed using the validation cohort. Seven independent factors predicted program attrition: gender, age, household income, comorbidity, chronic pain, site's user population size, and average age of site staff. Six factors predicted long-term attrition: gender, age, marital status, chronic pain, site's user population size, and average age of site staff. Each model exhibited moderate to fair discriminatory power (C statistic in the validation set: 0.70 for program attrition, and 0.66 for long-term attrition) and excellent calibration. The resulting scoring system offers a low-technology approach to identify participants at elevated risk for attrition in future similar behavioral modification intervention projects, which may inform appropriate allocation of retention resources. This approach also serves as a model for other efforts to prevent participant attrition.

Psychosocial Predictors of Weight Loss among American Indian and Alaska Native Participants in a Diabetes Prevention Translational Project.

The association of psychosocial factors (psychological distress, coping skills, family support, trauma exposure, and spirituality) with initial weight and weight loss among American Indians and Alaska Natives (AI/ANs) in a diabetes prevention translational project was investigated. Participants (n = 3,135) were confirmed as prediabetic and subsequently enrolled in the Special Diabetes Program for Indians Diabetes Prevention (SDPI-DP) demonstration project implemented at 36 Indian health care programs. Measures were obtained at baseline and after completing a 16-session educational curriculum focusing on weight loss through behavioral changes. At baseline, psychological distress and negative family support were linked to greater weight, whereas cultural spirituality was correlated with lower weight. Furthermore, psychological distress and negative family support predicted less weight loss, and positive family support predicted greater weight loss, over the course of the intervention. These bivariate relationships between psychosocial factors and weight remained statistically significant within a multivariate model, after controlling for sociodemographic characteristics. Conversely, coping skills and trauma exposure were not significantly associated with baseline weight or change in weight. These findings demonstrate the influence of psychosocial factors on weight loss in AI/AN communities and have substantial implications for incorporating adjunctive intervention components.

Socioeconomic Disparities in Weight and Behavioral Outcomes Among American Indian and Alaska Native Participants of a Translational Lifestyle Intervention Project.

OBJECTIVE: To investigate possible socioeconomic disparities in weight and behavioral outcomes among American Indian and Alaska Native (AI/AN) participants in a translational diabetes prevention project. RESEARCH DESIGN AND METHODS: We analyzed data from the Special Diabetes Program for Indians Diabetes Prevention (SDPI-DP) Program, an evidence-based lifestyle intervention to prevent diabetes in 36 AI/AN grantee sites. A total of 2,553 participants started the 16-session Lifestyle Balance Curriculum between 1 January 2006 and 31 July 2008. Linear mixed models were used to evaluate the relationships of participant and staff socioeconomic characteristics with weight and behavioral outcomes at the end of the curriculum. RESULTS: A strong, graded association existed between lower household income and less BMI reduction, which remained significant after adjusting for other socioeconomic characteristics. Compared with others, participants with annual income <$15,000 also had less improvement in physical activity and unhealthy food consumption in bivariate models, but the relationships were only marginally significant in multivariate regressions. Furthermore, grantee sites with fewer professionally prepared staff were less successful at improving participant BMI and healthy food consumption than the other sites. The strong association between income and BMI reduction was reduced by 20-30% in the models with changes in diet variables but was unrelated to changes in physical activity. CONCLUSIONS: Significant socioeconomic disparities exist in weight outcomes of lifestyle intervention at both participant and site staff levels. Helping low-income participants choose more affordable healthy foods and increasing the proportion of professionally trained staff might be practical ways to maximize the effectiveness of lifestyle interventions implemented in "real-world" settings.

Participant and site characteristics related to participant retention in a diabetes prevention translational project.

Using multilevel analysis, this study investigated participant and site characteristics associated with participant retention in a multisite diabetes prevention translational project among American Indian and Alaska Native (AI/AN) people. We analyzed data from the Special Diabetes Program for Indians Diabetes Prevention Program (SDPI-DP), a lifestyle intervention to prevent diabetes implemented in 36 AI/AN grantee sites. A total of 2,553 participants were recruited and started the intervention between January 1, 2006 and July 31, 2008. They were offered the 16-session Lifestyle Balance Curriculum from the Diabetes Prevention Program (DPP) in the first 16-24 weeks of intervention. Generalized estimating equation models and proportional hazards models with robust standard error estimates were used to evaluate the relationships of participant and site characteristics with retention. As of July 31, 2009, about 50 % of SDPI-DP participants were lost to follow-up. Those who were younger, male, with lower household income, no family support person, and more baseline chronic pain were at higher risk for both short-term and long-term retention failure (i.e., not completing all 16 DPP sessions and loss to follow-up, respectively). Sites with large user populations and younger staff had lower likelihood of retaining participants successfully. Other site characteristics related to higher risk for retention failure included staff rating of participant disinterest in SDPI-DP and barriers to participant transportation and child/elder care. Future translational initiatives need to pay attention to both participant- and site-level factors in order to maximize participant retention.

Longitudinal trends in health-related quality of life in adults with cystic fibrosis.

BACKGROUND: Health-related quality-of-life (HRQOL) measures have been used as patient-reported outcomes in clinical trials in cystic fibrosis (CF), but there are limited data on HRQOL changes over time in adults with CF. METHODS: The Project on Adult Care in Cystic Fibrosis, a prospective, longitudinal panel study of 333 adults with CF at 10 CF centers in the United States, administered a disease-specific HRQOL measure, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), seven times over 21 months. The CFQ-R assesses both physical and psychosocial domains of health. Growth curve regression models were developed for each CFQ-R domain, adjusting for demographic and clinical characteristics. RESULTS: Between 205 and 303 adults completed surveys (response rate, 70%-93%). Mean age at baseline was 33 years (range, 19-64 years); mean FEV1 % predicted was 59.8% (SD, 22%). Over the 21 months of follow-up, lung function, frequency of pulmonary exacerbations, and nutritional indices were associated with physical CFQ-R domain scores. There were no significant population trends over time in the physical domain scores; however, there were population time trends in three psychosocial domains: treatment burden (+8.9 points/y), emotional functioning (+3.2 points/y), and social functioning (-2.4 points/y). Individual variation in both physical and psychosocial subscales was seen over 21 months. CONCLUSIONS: In a longitudinal multicenter population of adults with CF, clinical variables such as FEV1, exacerbation frequency, and weight were correlated with related CFQ-R subscales. For the population as a whole, the physical domains of CFQ-R, such as respiratory symptoms, were stable. In contrast, population changes in several psychosocial domains of CFQ-R suggest that differentiating between the physical and the psychosocial trajectories in health among adults with CF is critical in evaluating patient-reported outcomes.

A cluster randomized controlled trial of child-focused psychiatric consultation and a school systems-focused intervention to reduce aggression.

BACKGROUND: While school-based anti-bullying programs are widely used, there have been few controlled trials of effectiveness. This study compared the effect of manualized School Psychiatric Consultation (SPC), CAPSLE (a systems and mentalization focused whole school intervention), and treatment-as-usual (TAU) in reducing aggression and victimization among elementary school children. METHOD: Participants were 1,345 third to fifth graders in nine elementary schools in a medium-sized Midwestern city who took part in a cluster-level randomized controlled trial with stratified restricted allocation, to assess efficacy after two years of active intervention and effectiveness after one year of minimal input maintenance intervention. Outcome measures included peer and self-reports of bullying, bystanding, and mentalizing behavior and classroom behavioral observations of disruptive and off-task behavior. RESULTS: CAPSLE moderated the developmental trend of increasing peer-reported victimization (p < .01), aggression (p < .05), self-reported aggression (p < .05) and aggressive bystanding (p < .05), compared to TAU schools. CAPSLE also moderated a decline in empathy and an increase in the percent of children victimized compared to SPC (p < .01) and TAU conditions (p < .01). Results for self-reported victimization, helpful bystanding, and beliefs in the legitimacy of aggression did not suggest significantly different changes among the study conditions over time. CAPSLE produced a significant decrease in off-task (p < .001) and disruptive classroom behaviors (p < .01), while behavioral change was not observed in SPC and TAU schools. Superiority with respect to TAU for victimization (p < .05), aggression (p < .01), and helpful (p < .05) and aggressive bystanding (p < .01) were maintained in the follow-up year. CONCLUSIONS: A teacher-implemented school-wide intervention that does not focus on disturbed children substantially reduced aggression and improved classroom behavior.

Advance care planning in adults with cystic fibrosis.

BACKGROUND: Because many patients with cystic fibrosis (CF) continue to survive into adulthood, discussion of end-of-life care decisions between clinicians and patients becomes a crucial part of CF adult care. Advance care planning (ACP) promotes alignment of patient care at the end of life with an individual's goals, however minimal research exists on ACP in CF. METHODS: We surveyed adults enrolled in the Project on Adult Care in Cystic Fibrosis (PAC-CF). We assessed experiences with ACP processes and communication and sought to identify factors associated with completion of an advance directive. RESULTS: The mean age of respondents (n = 234) was 34 years and the mean forced expiratory volume in 1 second (FEV(1)) was 64% predicted. Seventy-four percent reported that they had spoken to someone, generally a family member, about the care they would want if they became too ill to make decisions for themselves. However, only 30% reported completing an advance directive. Although 79% reported feeling comfortable talking to their clinician about ACP, only 28% said that their CF clinicians have asked about ACP. Having specific wishes about treatment decisions (odds ratio [OR] 7.8, 95% confidence interval [CI] 1.9-32.1) and reporting that a clinician had discussed ACP (OR 4.4, 95% CI 1.5-12.6) were significantly associated with reporting the completion of an advance directive. DISCUSSION: Though the majority of adults with CF report thinking about and communicating with family about advance care wishes, only a minority report completing an advance directive. Few adults with CF report being asked about ACP by their clinicians. Formulating specific wishes and discussing ACP with a clinician are strongly associated with completing an advance directive. Efforts to improve clinician communication with CF adults around ACP are needed to ensure that discussion of advance directives becomes an integral component of adult CF care.

Negative affect in victimized children: the roles of social withdrawal, peer rejection, and attitudes toward bullying.

This study evaluated the validity of mediating pathways in predicting self-assessed negative affect from shyness/social withdrawal, peer rejection, victimization by peers (overt and relational), and the attitude that aggression is legitimate and warranted. Participants were 296 3rd through 5th graders (156 girls, 140 boys) from 10 elementary schools. Self-report measures of victimization, attitudes, and negative affect, and a teacher-report measure of shyness/social withdrawal and peer rejection were completed during the spring semesters of 2 consecutive years. Hierarchical regression analyses supported the mediational model in predicting negative affect at Time 2. However, an increase in negative affect over the 12-month study period was best accounted for by direct effects of increased victimization and changes in attitudes/attributions regarding aggression. Implications for the planning of school interventions designed to interrupt these victimization-maladjustment pathways are discussed.