Symptom Burden and Quality of Life Over Time in Pediatric Eosinophilic Esophagitis.

OBJECTIVE: The aim of the study was to evaluate whether children with eosinophilic esophagitis (EoE) demonstrated an association between health-related quality of life (HRQoL) improvements and symptom reduction during 12 months of treatment; to examine age-related EoE discrete symptom presentation; and to describe residual symptom and HRQoL burden. METHODS: Children ages 2 to 18 years with EoE were assessed at the onset of treatment and 12 months later at 4 tertiary care centers. Continuous measures of symptoms and symptom severity were based on 8 discrete EoE symptoms. HRQoL was measured with the Pediatric Quality of Life (PedsQL) parent-proxy (PR) report, child self-report (CR), and Family Impact Module. Mixed-effects modeling was used to test changes over time for symptom burden and child and family HRQoL. RESULTS: One hundred nine children were followed (ages 2-18 years, mean age 7.6 [4.6] years, 77% boys, 87% white). Baseline symptom number mean was 3.5 (standard deviation = 2.3, range 0-8) and symptom severity mean was 5.5 (standard deviation = 4.3, range 0-24). EoE symptom number and symptom severity decreased significantly over the 12 months (P = 0.013, P < 0.001, respectively). PedsQL PR Total, Physical, Psychosocial, and Family Impact scores all improved significantly (P = 0.001, 0.012, 0.012, 0.015, respectively) but PedsQL child self-report scores did not. Symptom reduction correlated with PR PedsQL improvement (P = 0.01). Few discrete symptoms completely remitted, but lowered severity ratings indicated clinically significant improvement. CONCLUSIONS: Year-long treatment in multidisciplinary tertiary centers reduced most symptoms and improved parent-reported HRQoL in children with EoE. The frequency of residual symptoms and persistently lower HRQoL, however, underscore the chronic nature of pediatric EoE.

Role of behavioral health in management of pediatric atopic dermatitis.

OBJECTIVE: To describe the behavioral components and complications in treating pediatric patients with atopic dermatitis (AD) and the critical role of behavioral health professionals in addressing disease impact and behavioral aspects of disease management for these patients and families. DATA SOURCES: Studies and review articles were selected from medical and psychology databases for relevance to pertinent topics. RESULTS: AD has significant negative effects in affected individuals and their families on quality of life, behavioral, emotional, and sleep disturbances, and family functioning. Effective treatment strategies for AD are available, but the challenges for children and parents in coping with disease-related concerns and in following through with the multiple aspects of treatment are considerable. A biopsychosocial model, which incorporates the interplay among biological, psychological, and social dimensions of medical care, can be implemented in various treatment settings to achieve an integrated medical and behavioral health care approach. By sharing a family orientation, using a stress and coping model, and taking into account children's developmental capabilities and concerns, medical and behavioral health care providers are equipped to bring an in-depth understanding and different evidence-based therapeutic tools to address emotional, behavioral, and interpersonal challenges imposed by moderate to severe AD in children and families. CONCLUSION: Behavioral health and medical providers working together to provide integrated care play a critical role in helping children and families cope with the burdens imposed by AD, successfully manage the disease, and achieve optimal quality of life for affected children and their families.

Children's Food Allergies: Development of the Food Allergy Management and Adaptation Scale.

OBJECTIVE: Develop a measure that evaluates effective pediatric food allergy (FA) management, child and parent FA anxiety, and integration of FA into family life. METHODS: A semistructured family interview was developed to evaluate FA management using a pilot sample (n = 27). Rating scales evaluated eight dimensions of FA management (FAMComposite), child anxiety, parent anxiety, and overall balanced integration (BI). Families of children with IgE-mediated food allergies (n = 60, child age: 6-12) were recruited for interview and rating scale validation. RESULTS: FAMComposite was correlated with physician ratings for families' food avoidance and reaction response readiness. FA anxiety was correlated with general anxiety measures for children, but not parents. Parents' FA anxiety was correlated with expectations of negative outcomes from FA. Low BI was associated with poor quality of life and negative impact on family functioning. CONCLUSIONS: Preliminary analyses support Food Allergy Management and Adaptation Scale validity as a measure of family adaptation to pediatric FA.

Wet wrap therapy in children with moderate to severe atopic dermatitis in a multidisciplinary treatment program.

BACKGROUND: Atopic dermatitis (AD) is the most common chronic, relapsing inflammatory skin disease of children and is a global public health problem. National and international AD guidelines address AD care in a stepwise fashion. Wet wrap therapy (WWT) is a therapeutic intervention for moderate-to-severe AD. OBJECTIVE: This cohort study evaluated the effectiveness of WWT as part of a multidisciplinary AD treatment program to improve disease severity. Patients treated in this unique outpatient program had moderate-to-severe AD and had multiple therapies that failed. METHODS: An observational cohort study was completed. The primary outcome was improvement in AD severity as measured by SCORAD (Scoring Atopic Dermatitis). Demographics; clinical management of AD, including use of antibiotics and systemic treatments; and WWT methodology were comprehensively described. RESULTS: Seventy-two children with a mean ± SD age of 4.6 ± 3.12 years were included. By using a paired t test, the SCORAD at admission and at discharge showed significant differences in mean ± SD values, of 49.68 ± 17.72 versus 14.83 ± 7.45, respectively (t, 18.93; df, 71; P < .001). None of these patients required systemic immunosuppressive therapy during the treatment program. By using a previously published parent-administered outcomes tool, patients were shown to maintain clinical improvement of their AD 1 month after discharge. CONCLUSION: To our knowledge, this study is the largest to date of WWT for pediatric patients with moderate-to-severe AD by using a validated outcomes tool. None of the patients required systemic immunosuppressive therapy, and only 31% were treated with an oral antibiotic. This study demonstrated the benefit of incorporating WWT as an acute intervention in a supervised multidisciplinary AD treatment program with lasting benefit 1 month after discontinuing this intervention.

Health-related quality of life over time in children with eosinophilic esophagitis and their families.

OBJECTIVES: Existing treatments for pediatric eosinophilic esophagitis (EoE) effectively reduce inflammation. The impact of treatment on health-related quality of life (HRQoL) over time for pediatric patients with EoE and their families, however, has not been systematically assessed. We hypothesized that individualized multidisciplinary treatment would improve both child and family HRQoL over time, with improvements associated with decreased symptom severity. METHODS: Children with EoE treated in 4 tertiary care centers were enrolled. Baseline assessments occurred at the time of patients' first evaluation; follow-up assessments occurred at 2 and 6 months after baseline. Presence and severity of 8 EoE symptoms were measured. HRQoL was measured with the Pediatric Quality of Life Inventory parent proxy report, child self-report (CR), and Family Impact Module (FIM). Statistical analyses used mixed-effects modeling to test changes over time for child and family HRQoL. RESULTS: Ninety-seven children were enrolled (ages 2-18 years, mean age 7.7 years ±â€Š4.8, 78% boys, 80% white). Baseline mean symptom number was 3.5 (standard deviation 2.3), and symptom severity was 5.5 (standard deviation, 4.5). HRQoL scores were significantly related to symptom scores (P < 0.001). EoE symptom severity decreased during the study (P = 0.03). Pediatric Quality of Life Inventory parent proxy Total and FIM Total scores improved from baseline to 6 months (respectively, adjusted means 78.4 vs 81.0, P = 0.0006; 68.9 vs 70.1, P = 0.03). Interactions with baseline symptom severity revealed that subjects with lowest symptom severity showed the most improved HRQoL scores (P = 0.0013). CONCLUSIONS: HRQoL improved during the course of evaluation and treatment, with positive changes being strongest for patients with less symptom severity at baseline.

Psychosocial dysfunction in children and adolescents with eosinophilic esophagitis.

OBJECTIVE: Children with eosinophilic esophagitis (EoE) experience daily challenges related to coping with symptoms and the psychosocial effect of this chronic disease. The aim of this study was to identify features of psychosocial dysfunction experienced by children with EoE who were evaluated in a tertiary care program. METHODS: We performed a retrospective review of EoE patients and their families' psychosocial evaluations performed in a tertiary care EoE program. Consecutive evaluations were analyzed to document reports of patients' disease-related pain/discomfort; feeding/appetite symptoms; sleep, social, and school problems; depression, anxiety; and overall psychological adjustment. RESULTS: Sixty-four patients received psychosocial evaluation during an 18-month period and were analyzed. Sixty-nine percent of children evaluated experienced some form of psychosocial problems, including social difficulties (64%), anxiety (41%), sleep difficulties (33%), depression (28%), and school problems (26%). Adjustment problems were identified in 44% of the sample. Older children experienced more adjustment difficulties than younger children (P = 0.05). Sleep disturbances and feeding problems predominated in the younger children. Anxious behavior and depressive feelings increased with age. Children with gastrostomy tubes (G-tubes) had more social, school, and psychological adjustment problems than those without. CONCLUSIONS: The majority of children with EoE who underwent health and behavior evaluation in a tertiary care program experienced psychosocial adjustment and coping problems. Evaluation and management by mental health professionals would likely benefit a majority of patients with this chronic disease.

PedsQL eosinophilic esophagitis module: feasibility, reliability, and validity.

OBJECTIVE: Eosinophilic esophagitis (EoE) is a chronic esophageal inflammatory condition with a paucity of information on health-related quality of life (HRQOL). The objective of the study was to report on the measurement properties of the PedsQL EoE Module. METHODS: The PedsQL EoE Module was completed in a multisite study by 196 pediatric patients with EoE and 262 parents of patients with EoE. RESULTS: The PedsQL EoE Module scales evidenced excellent feasibility (0.6%-3.1% missing), excellent group comparison reliability across total scale scores (patient α 0.93; parent proxy α 0.94), good reliability for the 7 individual scales (patient α 0.75-0.87; parent proxy α 0.81-0.92), excellent test-retest reliability (patient intraclass correlation coefficient 0.88; parent intraclass correlation coefficient 0.82), demonstrated no floor effects and low ceiling effects, and demonstrated a high percentage of scaling success for most scales. Intercorrelations with the PedsQL Generic Core Scales were in the medium (0.30) to large (0.50) range. PedsQL EoE Module scores were worse among patients with active histologic disease (≥ 5 eos/hpf) compared with those in remission (patient self-report: 63.3 vs 69.9 [P < 0.05]; parent proxy report: 65.1 vs 72.3 [P < 0.01]), and those treated with dietary restrictions compared with those with no restrictions (patient self-report: 61.6 vs 74.3 [P < 0.01]; parent proxy report: 65.5 vs 74.7 [P < 0.01]). CONCLUSIONS: The results demonstrate excellent measurement properties of the PedsQL EoE Module. Patients with active histologic disease and those treated with dietary restrictions demonstrated worse PedsQL scores. The PedsQL EoE Module may be used in the evaluation of pediatric EoE disease-specific HRQOL in clinical research and practice.

Prospectively assessed early life experiences in relation to cortisol reactivity in adolescents at risk for asthma.

Altered cortisol reactivity in individuals with asthma likely increases the risk of inflammation in the face of stress. Understanding antecedents of cortisol reactivity enhances knowledge of factors affecting asthma. Forty-eight subjects genetically predisposed for asthma, recruited from a study that assessed them from birth, completed a laboratory stress procedure and self-report measures at ages 17-19 years. Observation and parent reports from age 0 to 2 years were used to create a parent child relationship risk variable and to define criteria for a cumulative risk variable. In repeated measures analysis of 46 adolescents, those who had experienced early parent child relationship problems, specifically insecure attachment, had an attenuated cortisol stress response, even after controlling for concurrent psychological function and recent stressors (F = 4.6, p < .005). Cortisol stress response was not related to asthma status. This study supports a relationship between the parent child relationship during the first 2 years of life and later cortisol response to stress in youth at genetic risk for asthma.

Predictors for asthma at age 7 years for low-income children enrolled in the Childhood Asthma Prevention Study.

OBJECTIVE: To identify the predictive factors of early childhood wheezing in children of low socioeconomic status. STUDY DESIGN: The Childhood Asthma Prevention Study enrolled 177 low-income children (9-24 months old) with frequent wheezing. At age 7 years, presence of asthma was assessed through caregiver reports of physician diagnosis of asthma (CRPDA) and corroborated by assessment of bronchial hyperresponsiveness (BHR). Lung function, inflammatory markers, and asthma symptom severity were compared for children with ±CRPDA, ±BHR, and asthma. Baseline predictors for CRPDA, BHR, and asthma at 7 years of age were examined. RESULTS: Maternal symptom report strongly differentiated children with +CRPDA (49%) despite comparable airflow measurements (P < .0001), and spirometric lung function measurements were different for +BHR (65%) versus -BHR (P < .005). Univariate analyses revealed different baseline predictors of +CRPDA and +BHR for children at age 7 years. Higher levels of maternal psychological resources were associated with +CRPDA, but not +BHR. Only 39% of children with a history of frequent wheezing met the conservative definition of asthma at age 7 years, with the following significant predictors found: low birth weight, baseline symptom severity, and maternal psychological resources. CONCLUSIONS: This low-income, multi-ethnic group of wheezing infants represents a unique population of children with distinct characteristics and risks for persistent asthma. Determination of asthma status at 7 years of age required objective measurement of BHR in addition to CRPDA. The association of maternal psychological resources with +CRPDA may represent a previously unrecognized factor in the determination of asthma status among low-income groups.

Validity of the Family Asthma Management System Scale with an urban African-American sample.

OBJECTIVE: To examine the reliability and validity of the Family Asthma Management System Scale for low-income African-American children with poor asthma control and caregivers under stress. The FAMSS assesses eight aspects of asthma management from a family systems perspective. METHODS: Forty-three children, ages 8-13, and caregivers were interviewed with the FAMSS; caregivers completed measures of primary care quality, family functioning, parenting stress, and psychological distress. Children rated their relatedness with the caregiver, and demonstrated inhaler technique. Medical records were reviewed for dates of outpatient visits for asthma. RESULTS: The FAMSS demonstrated good internal consistency. Higher scores were associated with adequate inhaler technique, recent outpatient care, less parenting stress and better family functioning. Higher scores on the Collaborative Relationship with Provider subscale were associated with greater perceived primary care quality. CONCLUSIONS: The FAMSS demonstrated relevant associations with asthma management criteria and family functioning for a low-income, African-American sample.

An official American Thoracic Society workshop report: tobacco control initiatives within the American Thoracic Society.

Cigarette smoking represents the single most preventable cause of premature morbidity and mortality in the United States and the burden of tobacco use is apparent world-wide. Cigarette smoking is a major risk factor for chronic obstructive pulmonary disease, the third leading cause of death in the United States in 2004. The American Thoracic Society (ATS) and its members have contributed significantly to an understanding of the biological and pathophysiologic mechanisms responsible for the development and management of tobacco-attributable disease and disability. The society's active involvement in tobacco control advocacy and policy-related initiatives are central to its mission. Within the ATS, there is also increased interest in accelerating the society's efforts to understand the mechanisms responsible for the uptake, persistence, and cessation of tobacco use. Scientific, clinical, and educational activities that include an examination of these underlying mechanisms are warranted. This paper describes findings from an ATS initiative that developed a preliminary strategy for enhancing scientific, clinical, educational, and policy-related tobacco control efforts that are consistent with the vision of the ATS. The specific aims of this project included the identification of existing mechanisms, as well as the current governance in place within the ATS infrastructure, to address tobacco control issues related to scientific inquiry, policy initiatives, and advocacy for tobacco control. This assessment generated recommendations to inform the ATS leadership with regard to the future development of relevant tobacco control initiatives.

Psychological impact of eosinophilic esophagitis on children and families.

Because eosinophilic esophagitis (EoE) has only recently been recognized and described, systematic research regarding the natural history of the disease and the short- and long-term effects of treatment is in its infancy. Clinical experience indicates that disease symptoms and treatments can have profound effects on the quality of life of affected children and their families. The responses of children and adolescents are variable, and are dependent on developmental level, temperament, and pre-existing psychological adjustment. Although parents of chronically ill children typically experience increased burden and stress, it is possible that the uncertainties currently associated with EoE contribute to even higher levels of anxiety. Research studies are needed to investigate the impact of EoE symptoms and of current treatments on quality of life and psychological adjustment in children and their families.

The Atopic Dermatitis Quickscore (ADQ): validation of a new parent-administered atopic dermatitis scoring tool.

BACKGROUND: Atopic dermatitis (AD) severity is assessed using relatively elaborate scoring systems administered by health care practitioners; modification for parent assessment or self-assessment is limited. For ongoing home-based evaluation of pediatric AD treatment and outcomes, a quick, easy-to-use, parent-administered scoring tool is essential. OBJECTIVE: To evaluate the validity and responsiveness to change of the Atopic Dermatitis Quickscore (ADQ) compared with the established, widely used Scoring Atopic Dermatitis Severity Index (SCORAD). METHODS: The ADQ was developed for parent report and was validated against the SCORAD. The SCORAD assesses percentage of body surface area involved, intensity of a "representative area," pruritus, and insomnia. The ADQ assesses involvement and pruritus of 7 body parts. Sixty-eight children entering a pediatric day treatment program for moderate to severe AD were recruited. Skin severity was scored at admission by a physician assistant using the SCORAD and by a parent using the ADQ. Pearson correlations of the 2 scales were assessed. RESULTS: The ADQ total score correlates with the SCORAD total score (r = 0.64, P < .001). The ADQ pruritus score correlates with the SCORAD pruritus score (r = 0.62, P < .001). Correlation at the end of treatment was also seen for ADQ and SCORAD total and pruritus scores (r = 0.39, P = .02, and r = 0.66, P < .001, respectively). Responsiveness of both scales to change in skin condition was demonstrated, with significant decreases in total and pruritus scores (P < .001). CONCLUSIONS: The parent-administered ADQ takes 5 minutes to complete. Scores from the ADQ and the SCORAD are well correlated and are responsive to changes in skin condition, supporting the validity of the ADQ.

Addressing the psychological needs of families of food-allergic children.

The increase in food allergies among US children has led to greater awareness of the psychological impact on their families. A variety of negative effects can result from both the daily strain of food-allergy management and the constant vigilance and fear that this condition engenders. Most of these effects are normal and expected responses to having a child with a demanding condition filled with uncertainties. However, a small but substantial proportion of families living with childhood food allergy experience significant psychological distress and/or maladaptive coping responses that interfere with the child's psychological and social development and family members' optimal functioning. Health care providers must be aware of the psychological challenges these families face, understand their role in helping families to achieve positive adaptation, and know when to encourage families to seek psychoeducational guidance.

Reciprocal influences in children's and families' adaptation to early childhood wheezing.

OBJECTIVE: The objective of the present study was to demonstrate the reciprocal relationships between family adaptation to illness and children's medication use over time among children who presented with wheezing illness in infancy but have varying illness outcomes by age 4. DESIGN: A longitudinal design and latent growth curve models (LGM) were used to predict change in family and caregiver adaptation to illness and children's medication use over three years among 140 infants with wheezing, among families from low socioeconomic, multi-ethnic backgrounds. MAIN OUTCOME MEASURES: One LGM predicted level and change (slope) of family adaptation to illness from children's baseline medication use. The second LGM predicted level and change (slope) of children's medication use from baseline family adjustment to illness. In both models, illness severity, caregivers' psychological resources, and emergency department use were covaried with the independent variable. RESULTS: Two latent growth models were found to adequately fit the data and demonstrate full reciprocal relations between family adaptation to illness and children's medication use while accounting for baseline variables. Baseline measures of caregiver psychological functioning and illness severity were also significant predictors of family adaptation and children's medication use over time. The two models were not statistically different for children with and without active asthma at 4 years of age. CONCLUSION: Findings support the reciprocal effects model of child and family influences on pediatric illness and underscore the importance of early indicators of individual and family functioning.

Family psychological factors in relation to children's asthma status and behavioral adjustment at age 4.

The objectives of this study were to determine whether family psychosocial factors influenced asthma development by age 4, and whether family factors and early wheezing illness were associated with behavioral adjustment at age 4. Participants were 98 children enrolled in an intervention study at 9-24 months and followed to age 4. Baseline evaluations assessed infants' respiratory illness severity, family psychosocial characteristics, and parental risk factors for asthma development. Active asthma categorization at age 4 utilized both parent report and objective data. Parents completed the Child Behavior Checklist (CBCL). Caregiver single-parent status, a composite of baseline family stresses, and early wheezing illness severity were associated with active asthma at age 4. The contribution of prenatal smoke exposure and early hospitalization to active asthma varied with racial/ethnic group membership. Maternal mental health and family stresses predicted CBCL scores at age 4, whereas early illness severity and hospitalization were unrelated to CBCL scores. CBCL scores were not elevated for children with active asthma at age 4. Family factors consistent with a negative emotional environment were associated with both active asthma and adjustment problems at age 4, suggesting that both outcomes may be influenced by a common factor.

Outcome of a randomized multifaceted intervention with low-income families of wheezing infants.

OBJECTIVE: To evaluate the outcome of a secondary intervention conducted with infants at risk for asthma. DESIGN: Families of wheezing infants were randomized to a 1-year intervention or control group; outcome evaluation occurred from April 1, 2000, through September 30, 2003, when children reached 4 years of age. SETTING: Home intervention and clinic evaluation. PARTICIPANTS: A total of 149 children from low-income urban families with multiple wheezing episodes before the age of 2 years. INTERVENTION: Nurse home visitors provided a multifaceted intervention (environmental allergen and tobacco smoke reduction as well as illness management) that lasted 12 months, with the goal of decreasing asthma onset and/or severity when children reached 4 years of age. MAIN OUTCOME MEASURES: Asthma status (parent-reported symptoms, impulse oscillometry, and documented asthma diagnosis), caregiver quality of life, medication use, and emergency department visits. RESULTS: A total of 46.0% of children from the intervention group and 54.9% from the control group met criteria for asthma at the age of 4 years (P = .33). Caregiver quality of life was better for the intervention group (P = .01). Children in the intervention group were less likely to have reactive airways (prebronchodilator-postbronchodilator decrease in impulse oscillometry resistance at 10 Hz of > or =15%; P = .07). Outcome was modified by baseline illness severity; among children with low severity, odds of developing asthma by the age of 4 years were 3 times lower for intervention children than controls (P = .04), and symptom severity was lower for intervention children (P = .03). CONCLUSIONS: Multifaceted intervention did not decrease asthma among children with early wheezing illness as a whole, but only for children with low illness severity in infancy. Despite having an impact on only less severely ill children, results demonstrate the possibility of ameliorating illness burden for some inner-city families with children at high risk for poor asthma outcomes.

Validity of the Five Minute Speech Sample in families with infants from low-income backgrounds.

Caregivers of 169 infants from low-income and multi-ethnic backgrounds completed the Five Minute Speech Sample (FMSS). Validity of the FMSS was supported by demonstrating significant associations among positive and negative affect dimensions of the FMSS and other indices of the caregiving environment.