Biopsychosocial Predictors of Quality of Life Outcomes in Pediatric Congenital Heart Disease.

The purpose of this prospective multi-center cross-sectional study was to identify key biopsychosocial factors that impact quality of life (QOL) of youth with congenital heart disease (CHD). Patient-parent pairs were recruited at a regular hospital follow-up visit. Patient- and parent-proxy-reported QOL were assessed using the Pediatric Cardiac Quality of Life Inventory (PCQLI). Wallander's and Varni's disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, child psychological and parent/family factors. Measures utilized for these factors included the Pediatric Inventory for Parents, Self-Perception Profile for Children/Adolescents, Child Behavior Checklist, Revised Children's Manifest Anxiety Scale, Child PTSD Symptom Scale, State-Trait Anxiety Inventory, and Posttraumatic Diagnostic Scale. Ordinary least squares regression was applied to test the theoretical model, with backwards stepwise elimination process. The models accounted for a substantial amount of variance in QOL (Patient-reported PCQLI R 2 = 0.58, p < 0.001; Parent-proxy-reported PCQLI R 2 = 0.60, p < 0.001). For patient-reported QOL, disease factors, educational impairment, poor self-esteem, anxiety, patient posttraumatic stress, and parent posttraumatic stress were associated with lower QOL. For parent-proxy-report QOL, disease factors, educational impairment, greater parental medical stress, poorer child self-esteem, more child internalizing problems, and parent posttraumatic stress were associated with lower QOL. The results highlight that biopsychosocial factors account for over half the variance in QOL in CHD survivors. Assessing and treating psychological issues in the child and the parent may have a significant positive impact on QOL.

Topical Review: Translating Translational Research in Behavioral Science.

OBJECTIVE: To present a model of translational research for behavioral science that communicates the role of behavioral research at each phase of translation. METHODS: A task force identified gaps in knowledge regarding behavioral translational research processes and made recommendations regarding advancement of knowledge. RESULTS: A comprehensive model of translational behavioral research was developed. This model represents T1, T2, and T3 research activities, as well as Phase 1, 2, 3, and 4 clinical trials. Clinical illustrations of translational processes are also offered as support for the model. CONCLUSIONS: Behavioral science has struggled with defining a translational research model that effectively articulates each stage of translation and complements biomedical research. Our model defines key activities at each phase of translation from basic discovery to dissemination/implementation. This should be a starting point for communicating the role of behavioral science in translational research and a catalyst for better integration of biomedical and behavioral research.

Distress at the Dinner Table? Observed Mealtime Interactions among Treatment-Seeking Families of Obese Children.

BACKGROUND: Although family-based, behavioral interventions for pediatric obesity require caregivers to make major changes to dietary intake and the family meal, few studies have examined family functioning, and specifically, mealtime behaviors among families of treatment-seeking obese children. The current study compared mealtime family functioning of treatment-seeking obese children and nonobese demographically matched comparisons using a multimethod design. METHODS: Participants included the families of 27 obese children (BMI ≥95(th) percentile; M body mass index (BMI) z-score values [M zBMI] = 2.55) at the time of treatment initiation and 27 families of nonobese children (M zBMI = 0.17). Each family's evening meal was videotaped and coded for observed family functioning using the Mealtime Interaction Coding System (MICS). Caregivers completed a demographics form and a measure of family mealtime climate. RESULTS: Caregivers of obese children self-reported greater mealtime challenges and a less positive meal environment than non-obese comparisons. There were no significant group differences in observed family mealtime interactions. CONCLUSION: Interestingly, although group means on the observational measure of mealtime family functioning were not significantly different, caregivers of obese children reported greater mealtime stress. Accordingly, it is important in the context of treatment to address caregiver perceptions of mealtime challenges and to examine the extent to which these self-reported challenges affect implementation of treatment recommendations and treatment outcomes.

Health-related quality of life across pediatric chronic conditions.

OBJECTIVE: To compare health-related quality of life (HRQOL) across 8 pediatric chronic conditions, including 5 understudied populations, and examine convergence between youth self-report and parent-proxy report. STUDY DESIGN: Secondary data from 589 patients and their caregivers were collected across the following conditions: obesity, eosinophilic gastrointestinal disorder, inflammatory bowel disease, epilepsy, type 1 diabetes, sickle cell disease, post-renal transplantation, and cystic fibrosis. Youth and caregivers completed age-appropriate self-report and/or parent-proxy report generic HRQOL measures. RESULTS: Youth diagnosed with eosinophilic gastrointestinal disorder and obesity had lower HRQOL than other pediatric conditions by parent report. Caregivers reported lower HRQOL by proxy report than youth self-reported across most subscales. CONCLUSIONS: Use of brief, easily administered, and reliable assessments of psychosocial functioning, such as HRQOL, may provide clinicians additional opportunities for intervention or services targeting improved HRQOL relative to the needs of each population.

Changes in pediatric health-related quality of life in cystic fibrosis after IV antibiotic treatment for pulmonary exacerbations.

Intravenous (IV) antibiotic therapy for pulmonary exacerbations (PE) has been shown to improve pulmonary functioning for patients with cystic fibrosis (CF); however, little is known about its effects on pediatric health-related quality of life (HRQOL). This prospective study assessed the impact of IV treatment of a PE on generic and CF-specific HRQOL for children and adolescents with CF. Participants included 52 children and adolescents with CF experiencing a PE (M (age) = 13.6 years; 54% males; M(FEV(1%)) predicted = 58.8%). HRQOL, pulmonary functioning, and body mass index were assessed before and after IV antibiotic treatment. Results of this prospective, observational study indicated significant improvements on CFQ-R Respiratory (M (change score) = 11.7; 95% CI = 6.3-17.1; p < .0001) and Weight (M (change score) = 15.9; 95% CI = 7.9-23.8; p < .0001) scales. The CF-specific measure was more sensitive to changes in HRQOL than the generic instrument. These data suggest that CF-specific HRQOL improves with treatment for a PE with IV antibiotics. The noted statistically and clinically significant changes in the CFQ-respiratory scale indicate that the measure may be beneficial to pulmonary health care teams.

Family functioning in the context of pediatric chronic conditions.

OBJECTIVE: The aims were to describe and compare generic family functioning in children with five different chronic conditions and healthy comparisons, and to examine the relations between family functioning and sociodemographic variables. METHODS: A secondary data analysis from six independent studies including 301 children (cystic fibrosis: n = 59; obesity: n = 28; sickle cell disease: n = 44; inflammatory bowel disease: n = 43; epilepsy: n = 70; healthy comparison group: n = 57) was conducted. In each study, parents completed the Family Assessment Device. RESULTS: Across all five chronic conditions, between 13% and 36% of families endorsed levels of functioning in the "unhealthy" range, with the greatest proportions in the following domains: communication, roles, and affective involvement. No significant group (i.e., between all six groups, namely five chronic conditions as well as healthy comparisons) differences were observed on Family Assessment Device scales (model F [35, 1335] = 0.81, p = .79). Older child age, fewer children living in the home, and lower household income were significantly related to poorer family functioning in the areas of communication, roles, affective involvement, and general functioning. CONCLUSIONS: Families of children with and without chronic conditions do not differ significantly from each other on generic family functioning. However, risk factors for poor family functioning include older child age, less children in the home, and lower household income. These risk factors combined with data suggesting that a subset of families exhibit "unhealthy functioning" warrants the need for close monitoring of how families function in the context of a pediatric condition.

Family functioning at meals relates to adherence in young children with type 1 diabetes.

AIMS: This study examined associations between mealtime family functioning, dietary adherence and glycaemic control in young children with type 1 diabetes mellitus (T1DM). We hypothesised that poorer family functioning would correlate with poorer dietary adherence and glycaemic control. METHODS: Thirty-five families of children (M = 5.6 +/- 1.5 years) with T1DM had meals videotaped in their home, which were coded for family functioning according to the McMaster Interaction Coding System. Children's dietary adherence was assessed according to deviations from the prescribed number of carbohydrate units per meal and recommended carbohydrate intake levels per day. Glycaemic control was measured via 14 days of self-monitoring of blood glucose levels. RESULTS: Findings demonstrated significant negative associations between children's dietary adherence and two dimensions of family functioning: Task Accomplishment (r=-0.43, P= 0.03) and Behavioral Control (r=-0.54, P= 0.00). Affect Management correlated negatively with the percent of blood glucose levels below the normal range (r=-0.33, P= 0.05). Eleven families (31%) of young children with type 1 diabetes demonstrated mealtime family functioning in the unhealthy range. CONCLUSIONS: This was the first study to examine the relationship between mealtime family functioning and children's dietary adherence and glycaemic control in families of young children with T1DM. Previous research has found mealtime family functioning to be impaired in families of young children with T1DM when compared with families of children without diabetes. Research is needed to determine if family functioning and dietary adherence can be improved via specific family-based behavioural training around mealtimes.

Examining short-term stability of the Mealtime Interaction Coding System (MICS).

OBJECTIVE: This study assessed the stability of ratings on the McMaster Mealtime Interaction Coding System (MICS), an observational measure of family functioning, across three typical evening meals. METHODS: Participants included families of infants and toddlers with cystic fibrosis (n = 33) and with no chronic illness (n = 33). Three meals were videotaped across a 3-week period (M = 17.4 days) and involved a secondary data analysis from a larger study. RESULTS: Across both groups, test-retest reliability (paired correlation coefficients) was generally moderate, but significant, for all scales at each time point comparison. Analyses revealed no significant within-or between-group differences across time periods on healthy versus unhealthy ratings. CONCLUSIONS: This study highlights the limitations of coding a single mealtime observation or interpreting multiple observations using the MICS. Findings highlight that family, meal, illness, and assessment factors may impact variability in ratings over time.

Observational assessment of family functioning in families with children who have type 1 diabetes mellitus.

OBJECTIVE: Children with type 1 diabetes mellitus have a complex treatment regimen that includes insulin therapy and dietary requirements (e.g., matching insulin and carbohydrate intake). Previous research has shown that parents of children with type 1 diabetes mellitus report significant mealtime challenges and higher parenting stress compared to parents of healthy controls. The objective of the current study was to compare family functioning in children with type 1 diabetes mellitus (ages 2-8) to a matched, healthy control sample. Sixty-six families (33 diabetes; 33 controls) participated in a home visit at which their evening meal was videotaped. Tapes were then coded using the McMaster Interaction Coding System to objectively assess family functioning. RESULTS: Results indicated that families in the diabetes group demonstrated significantly poorer family functioning in a majority of areas (communication, affect management, family roles, overall functioning) compared to the healthy control sample. Additionally, families with lower socioeconomic status and families of male children evidenced poorer overall family functioning for both groups. CONCLUSIONS: Results also suggest that family-focused interventions for young children with type 1 diabetes should include components targeting family functioning in the areas of communication, affect management, and family roles.

Case study: providing evidence-based behavioral and nutrition treatment to a toddler with cystic fibrosis and multiple food allergies via telehealth.

Barriers to successful outcome for cystic fibrosis (CF) therapies can include distance from a CF care center, co-morbid conditions that require individualized alterations to the prescribed treatment, and patient-provider interactions, among others. We present the case of a 21-month-old female with CF for whom modifications of an efficacious behavioral and nutrition treatment were made due to food allergies and distance from the CF care center. She was classified as at-risk nutritionally. Following treatment a significant increase in energy intake (calories) was observed in addition to her meeting weight and height growth rates for a child of this age and gender who is growing normally at the 50th percentile.

Child and caregiver psychosocial functioning in pediatric immunodeficiency disorders.

BACKGROUND: Children with chronic illness have been found to be at an increased risk of behavioral and emotional difficulties. To date, children with pediatric immunodeficiency disorders (PIDDs) and their families have not been the focus of extensive published psychosocial research. OBJECTIVE: To determine if children with PIDDs and their caregivers have altered psychosocial function and whether the severity of the PIDD was associated with such difficulties. METHODS: Twenty children with PIDDs and 20 children with asthma were recruited for this study. Children and their caregivers completed various psychosocial questionnaire forms. Responses were compared with normative data for the appropriate measure and with other variables. RESULTS: Higher frequencies of children with PIDDs were found to have a number of elevated psychosocial concerns when contrasted with normative data, particularly from parent report. These concerns included depression, anxiety, somatization, social withdrawal, and social skills. The severity of the PIDDs was significantly associated with a number of behavioral adjustment issues, including receiving psychiatric diagnoses and special education services. Although children with PIDDs had significantly more psychiatric diagnoses than did asthmatic children, these groups did not differ significantly on questionnaire scores regarding child or caregiver psychosocial adjustment. CONCLUSIONS: Children with PIDDs have significant behavioral problems. Children receiving intravenous immunoglobulin or immunomodulatory treatments were reported to have more problems than children not receiving them. This study highlights the need for further research in psychosocial functioning of children with PIDDs in an effort to develop interventions to promote their overall adjustment.

Examining clinical trial results with single-subject analysis: an example involving behavioral and nutrition treatment for young children with cystic fibrosis.

OBJECTIVE: To examine the process of change in a clinical trial of behavioral and nutrition treatment for children age 18-48 months with cystic fibrosis (CF) using single-subject analysis. METHODS: The 5-week treatment included nutrition counseling and child behavioral management training for parents and was designed to increase energy intake measured by diet diaries 600-800 calories per day. RESULTS: Energy intake changed at each meal, only when treatment was introduced (week 1: snacks, 420 to 691; week 2: breakfast, 325 to 443; week 4: lunch, 350 to 443; and week 5: dinner, 373 to 460 calories per day). Total daily intake increased in a systematic fashion that exceeded the criterion set each week during treatment. CONCLUSIONS: Toddlers and preschoolers with CF meet energy intake recommendations as a result of behavioral intervention. Single-subject research designs are important methodologies for advancing clinical investigation in pediatric psychology.

Randomized clinical trial of behavioral and nutrition treatment to improve energy intake and growth in toddlers and preschoolers with cystic fibrosis.

OBJECTIVE: To conduct a randomized clinical trial comparing a behavioral and nutrition intervention (BEH) with a usual care control condition (CTL) for children (ages 18 months to 4 years) with cystic fibrosis (CF) and pancreatic insufficiency. This trial was designed to (1) evaluate a randomized comparison of BEH with CTL over 8 weeks, (2) provide a replication of the impact of BEH by inviting the CTL group to receive BEH after 8 weeks, and (3) examine the maintenance of BEH at 3- and 12-month follow-up. METHODS: Of 14 eligible children, 10 were randomly assigned and initiated treatment (71% recruitment rate). Four participants were randomly assigned to BEH, and 6 were assigned to CTL (5 of whom chose to crossover to BEH). BEH included nutrition counseling to increase energy intake (via types of foods and addables/spreadables) and child behavioral management training to teach parents differential attention and contingency management skills. CTL was consistent with the 2002 CF Foundation Consensus Conference Guidelines for nutritional care. RESULTS: BEH led to greater increases in energy intake pre- to posttreatment than CTL as measured by calories per day (842 kcal/day vs -131 kcal/day change). On receiving BEH, the change in energy intake was replicated with the CTL group (892 kcal/day change). At 3- and 12-month follow-up, energy intake was maintained (672 kcal/day increase from baseline and 750 kcal/day increase from baseline, respectively). Children in this study met or exceeded normal weight and height velocities from pretreatment to the 3-month follow-up (mean weight: 1.4 kg/6 months; mean height: 5.1 cm/6 months) and from posttreatment to the 12-month follow-up (mean weight: 2.5 kg/12 months; mean height: 8.3 cm/12 months). CONCLUSIONS: Toddlers and preschoolers who have CF and received BEH were able to meet the energy intake recommendations for this disease and maintain these gains up to 12 months after treatment. In addition, these children demonstrated weight and height velocities from pretreatment to 12-month follow-up, consistent with the goal of normal growth. BEH is a promising, evidence-based, early nutritional intervention for children with CF. An upcoming multisite clinical trial will test BEH versus an attention control condition using a larger sample (N = 100), providing additional evidence about the efficacy of this treatment for energy intake and growth in young children with CF.

Preinjury behavioral and emotional problems among pediatric burn patients.

Standardized behavior rating scales have been used in the routine care of children during medical visits because they provide an objective, norm-based index for the child's behavioral functioning. The purpose of this study was to examine behavior problems among children (aged 2.5-18 years) with burn injuries using the Behavioral Assessment System for Children, a multi-informant system of standardized rating scales that assesses clinical and adaptive behavior areas. Parents and youth (ages 8-18) completed the Behavioral Assessment System for Children with reference to the pediatric patient's behavioral functioning before hospital admission for a burn injury. In total, data were collected on 94 children. Results suggested that a substantial portion of the sample endorsed significantly elevated levels of behavioral difficulties across a broad range of problem behaviors. On the basis of parent report, preschoolers exhibited concerns related to hyperactivity, anxiety, aggression, and attention problems, whereas school-aged children were reported to have these same concerns as well as depression and conduct problems. Twenty percent of our adolescent sample (ages 12-18 years) were described to be experiencing even more internalizing and externalizing behavior problems relative to the two groups of their younger counterparts. Boys were found to contribute to the cause of their burn injury significantly more often than girls. The strengths, limitations, and clinical implications of our findings are discussed.

Assessing the relationship between locus of control and social competence in pediatric burn survivors attending summer cAMP.

Previous research suggests that children with burn injuries often exhibit psychological and social difficulties. The areas of functioning that are affected most often include level of anxiety, social competence, and self-esteem. Those children having an internal locus of control (LOC) have been shown to react more positively to physical disorders and to have better psychological responding in nonburn populations. The purpose of this study was to determine whether there is a relationship between LOC and social competence in pediatric burn survivors. Participants were children aged 8 to 18 years who had been treated for a burn injury and attended a 1-week summer camp for pediatric burn survivors. Results indicated that the type of LOC was not a predictor of the overall level of social competence, as reported on three different measures of social competence. However, LOC significantly accounted for variability in the child's cooperation level, according to parent report. Other results are discussed, as well as implications for future research and clinical work in this area.

Stress management for dental students performing their first pediatric restorative procedure.

Research has demonstrated that dental students experience considerable stress during their training. Students' anxiety is likely to be especially high when they perform their first pediatric restorative procedure. The aims of this study were to provide a description of dental students' level of anxiety and typical coping strategies and to evaluate the use of a distress management intervention for reducing anxiety around their first pediatric restorative procedure. Dental students were randomly assigned to either an Anxiety Management or an Attention Control group. The management group received training on relaxation strategies (i.e., deep breathing, progressive muscle relaxation). The control group attended a lecture on the relation among stress, anxiety, and health. No significant differences were found between group levels of anxiety related to their first pediatric restorative procedure. Information is provided on students' reported level of anxiety and general coping strategies. Limitations of the current study and suggestions for future research are provided.

An assessment of burn prevention knowledge in a high burn-risk environment: restaurants.

Our facility has seen an increase in the number of cases of children burned in restaurants. Fieldwork has revealed many unsafe serving practices in restaurants in our tristate area. The current research targets what appears to be an underexamined burn-risk environment, restaurants, to examine server knowledge about burn prevention and burn care with customers. Participants included 71 local restaurant servers and 53 servers from various restaurants who were recruited from undergraduate courses. All participants completed a brief demographic form as well as a Burn Knowledge Questionnaire. It was found that server knowledge was low (ie, less than 50% accuracy). Yet, most servers reported that they felt customer burn safety was important enough to change the way that they serve. Additionally, it was found that length of time employed as a server was a significant predictor of servers' burn knowledge (ie, more years serving associated with higher knowledge). Finally, individual items were examined to identify potential targets for developing prevention programs.