Carrie Piazza-Waggoner

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.

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.

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.

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.

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.

Topical Anesthesia Versus Distraction for Infants' Immunization Distress: Evaluation With 6-Month Follow-Up

Topical anesthetic and distraction are effective pain management techniques, yet they have not been fully evaluated for infants. Eighty-four 1-year-olds undergoing immunizations were randomized to distraction, topical anesthetic, or control. The 42 infants who returned for their 18-month injections were evaluated for long-term treatment gains. An observational scale revealed that infants demonstrated lower distress with distraction than topical anesthetic or control during the recovery phase of the injection at 12 months, and parents and nurses rated infants as more distressed at 12 than 18 months. Distress measures were positively associated across time.

A Comparison Using Parent Report and Direct Observation of Mealtime Behaviors in Young Children With Cystic Fibrosis: Implications for Practical and Empirically Based Behavioral Assessment in Routine Clinical Care

Parental stress and mealtime behavior problems have been found to be elevated in families with a child who has cystic fibrosis (CF). The purpose of this study was to conduct an exploratory comparison of parent report and direct observation of mealtime behaviors and parenting strategies in young children with CF. We take a pragmatic approach in that we strive to provide additional clinical validity for the Behavioral Pediatric Feeding Assessment Scale (BPFAS). Data are based on 19 families with a young child with CF who participated in a larger multisite study. Results indicated significant agreement between the two methods for a number of child and parent behaviors at mealtimes. Results of this study provide useful information for practitioners who are following the CF Foundation Nutrition Guidelines related to behavioral assessment of mealtimes and using the BPFAS as part of routine care.

The Impact of Behavioral Intervention on Family Interactions at Mealtime in Pediatric Cystic Fibrosis

The current study evaluated the impact of a behavioral intervention (Be In Charge!), targeting caloric intake and weight gain in children with CF, on family interactions at mealtime. Forty-five families of children with cystic fibrosis (CF), ages 4 to 12 years, were randomized to Be In Charge! or nutrition education and assessed using the McMaster Mealtime Family Interaction Coding System. No differences were found in family functioning between the two interventions pre- to posttreatment or 1-year follow-up, except for Affect Management. A significantly greater percentage of families receiving Be In Charge! demonstrated improvement in Affect Management from pretreatment to 1-year follow-up. Implications for developing the next generation of behavioral interventions are discussed.

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.

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.