Gail M. Kieckhefer

Assessment of children's health status: Field test of new approaches.

The assessment of childrens health status presents unique difficulties. These include parent-child differences in reports of functioning, knowledge of what constitutes age-appropriate functioning, obtainment of accurate information for child, and demonstration of the predictivity of health status measures. Recent measures (the Functional Status II-R and instruments from the RAND Health Insurance Experiment) address physical, social, and psychologic domains of childrens health. The authors modified these instruments to develop short (7 and 14 items) questionnaires (RAND, FSQ) to assess child health. Scoring on these questionnaires was compared with traditional measures of illness severity and medical service utilization. The authors also evaluated coding illness-specific and general health limitations (FSQ-S and FSQ-G, respectively). Patients included the parents of 113 children with chronic illness (100 asthmatics). Measure stability was evaluated over a 6-month period in a subset of patients. Internal consistency (Cronbachs alpha) of the seven-item RAND measure was .78, the FSQ-S .78, and the FSQ-G .73 to .89 during repeated samplings over 6 months. The FSQ-S and Rand seven-item measure were moderately correlated (.47, P<.001). The authors observed significant correlations among alternate codings of the FSQ and RAND and between the FSQ-S, FSQ-G, RAND, and severity measure with traditional indices of medical service utilization. Parents were more likely to attribute certain functional status problems (e.g., being tired) to illness than they were other problems (e.g., moodiness or interest in things). The findings demonstrate that these measures have acceptable psychometric properties and provide preliminary evidence of construct validity in a group of young children with asthma. Using general and specific measures will provide differing pictures of a childs functioning. No single measure completely taps the impact of illness as measured by a panel of traditional indicators of illness burden and medical service utilization.

Community Health Workers and Environmental Interventions for Children with Asthma: A Systematic Review

Community health worker (CHW)–delivered, home-based environmental interventions for pediatric asthma were systematically reviewed. Seven PubMed/MEDLINE listed randomized controlled trials that encompassed the following intervention criteria were identified: (1) home-based; (2) delivered by a CHW; (3) delivered to families with children with asthma; and (4) addressed multiple environmental triggers for asthma. Details of research design, intervention type, and setting, interventionist, population served, and the evaluated outcomes were abstracted. Outcome assessment was broad and non-uniform. Categories included direct mediators of improved health outcomes, such as trigger-related knowledge, trigger reduction behaviors and allergen or exposure levels, and asthma-related health outcomes: change in lung function, medication use, asthma symptoms, activity limitations, and health care utilization. Indirect mediators of health outcomes, or psychosocial influences on health, were measured in few studies. Overall, the studies consistently identified positive outcomes associated with CHW-delivered interventions, including decreased asthma symptoms, daytime activity limitations, and emergency and urgent care use. However, improvements in trigger reduction behaviors and allergen levels, hypothesized mediators of these outcomes, were inconsistent. Trigger reduction behaviors appeared to be tied to study-based resource provision. To better understand the mechanism through which CHW-led environmental interventions cause a change in asthma-related health outcomes, information on the theoretical concepts that mediate behavior change in trigger control (self-efficacy, social support) is needed. In addition, evaluating the influence of CHWs as clinic liaisons that enhance access to health professionals, complement clinic-based teaching, and improve appropriate use of asthma medications should be considered, alongside their effect on environmental management. A conceptual model identifying pathways for future investigation is presented.

Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships.

When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their childs chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their childs care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculums effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for ones self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.

Sleep measurement and monitoring in children with Down syndrome: a review of the literature, 1960-2010.

Children with Down syndrome (DS) are at risk for sleep disturbances due to the anatomical features of the syndrome. Over the past 50 years research studies have measured sleep in children with DS to characterize sleep architecture and its relation to developmental delay. In the 1980s sleep disordered breathing (SDB) was recognized as a major cause of sleep disturbance in DS. The aim of this comprehensive review is to synthesize studies and present the historical context of evolving technologies, methodologies, and knowledge about SDB and DS. Future research opportunities and practice implications are discussed.

The sensation of pulmonary dyspnea in school-age children.

The purpose of this investigation was to describe the sensation of dyspnea in a sample of 39 school-age children with asthma and to identify strategies used to cope with the symptom. In addition, three methods to measure dyspnea intensity in children were tested and compared. Breathing on a “bad breathing day” was used as a proxy variable to represent dyspnea. The most frequent description of how breathing feels on a bad day was “it is hard to breathe.” Words chosen most frequently from a checklist of sensations were “wheezy,” “short of breath,” “tight,” and physical sensations such as “throwing up,” “hurting,” and “stuffiness.” The childrens feelings on a bad breathing day were categorized as negative moods or emotions, a wish for change, or physical symptoms. Ratings of breathing on “good,” “bad,” and “usual breathing” days on word descriptor, visual analogue, and color scales provided evidence of concurrent validity for the three measures of dyspnea intensity. The mostfrequent strategies used to cope with dyspnea were medications, change in position, decreased activity, fluids, relaxation, distraction, and social support. The findings were very similar to those previously described for an adult sample.

Relationship between sleep disturbance and functional outcomes in daily life habits of children with Down syndrome.

OBJECTIVES The goal of this study was to describe sleep patterns and accomplishment of daily life habits in children with Down syndrome (DS) and to investigate the relationship between subjective indicators of sleep disturbance with functional outcomes in daily life. DESIGN Cross-sectional study with an Internet sample. SETTING Online survey filled out at home. PARTICIPANTS 110 parents of children with DS and 29 parents of children with typical development (TD), age 5 to 18 years. INTERVENTIONS N/A. MEASUREMENTS AND RESULTS Childrens Sleep Habits Questionnaire was employed to collect information about sleep disturbances in 8 domains (subscales) and a total score. The Life Habits (Life-H) questionnaire sampled information about daily life habits in 11 domains. Multivariable regression modeling was used to assess the associations between sleep disturbances and the accomplishment of daily life habits. Sleep disordered breathing (SDB) was a significant explanatory factor in 10 of 11 daily life habits and the total Life-H score. Sleep anxiety and parasomnias significantly influenced the accomplishment of life habits in children with DS as compared to children with typical development. When evaluated in multivariable models in conjunction with the other 7 domains of sleep disturbances, SDB was the most dominant explanatory factor for accomplishment of life habits. CONCLUSIONS Sleep disturbances are negatively related to accomplishment of daily life functions. Prevention and treatment of sleep problems, particularly sleep disordered breathing, in children with DS may lead to enhanced accomplishment of daily life habits and activities.

Nighttime sleep and daytime nap patterns in school age children with and without asthma

Objective: This research examines subjective and objective report of naps and nighttime sleep in 9- to 11-year-old children with and without asthma. Methods: This between subjects study collected prospective self-report diary and objective actigraphy measures of sleep from 27 children with and 27 without asthma during a 7-day/6-night at-home monitoring period. Results: Thirty-two percent of participants reported daytime naps. Nappers were more likely to be children with asthma (12/27 vs. 5/27, p = 0.04) even though the children with asthma did not report being more tired, sleepy, or less alert in the morning. Nappers did not differ from non-nappers on self-report measures of overall sleep quality or number of awakenings but were documented, via objective measures, to have later (clock time: 23:05 vs. 22:21, p = 0.04) and more variable (Levine’s Test for Equality of Variances: F = 10.68, p = 0.002) sleep onset times than non-nappers. Sleep offset times did not differ between the nappers vs. non-nappers, therefore, nappers had fewer total minutes of nighttime sleep than did the non-nappers (437 vs. 465, p = 0.04). Later (clock time: 23:01 vs. 22:15, p = 0.01) sleep onset times were also documented in minority vs. Caucasian children. Conclusions: Napping appears a more common behavior than expected especially in children with asthma or of minority ethnicity but the reasons are unclear. Self-report measures may not capture important sleep characteristics that objective measures can identify. Strategies to reduce late and variable bedtimes of all children are needed given our awareness of the negative cognitive, emotional, and behavioral consequences of poor sleep in children.

Daytime Physical Activity Levels in School-Age Children With and Without Asthma

Background:Physical activity (PA) is a significant predictor of health outcomes in children with and without chronic conditions. Few researchers have used actigraphy as an objective measure of PA during the child’s normal daily routines, and the findings have been inconsistent. It is unclear if asthma can contribute to low PA levels. Objectives:The aim of this study was to compare daytime PA levels in children with and without asthma and examine the relationships among asthma, PA, body mass index (BMI), and child reports of symptoms. Methods:Physical activity as measured by actigraphy and self-report symptoms of coughing, wheezing, chest tightness, perceived tiredness, sleepiness, and alertness were obtained in 54 children aged 9–11 years with and without asthma for 7 consecutive days. Activity variables derived from actigraphy included (a) mean daytime activity level; (b) peak daytime activity level; and (c) time duration spent in sedentary, light, moderate, vigorous, and total moderate plus vigorous PA (MVPA). Results:Children with and without asthma did not differ on BMI or activity levels. Children with asthma reported more activity limitations due to breathing problems than children without asthma (p < .01). In multivariate analyses, asthma predicted reduced mean, peak, and total time spent in MVPA level after controlling for gender, BMI, and self-report of symptoms. A significant interaction was found between asthma and BMI on mean, peak, and total time spent in MVPA. Discussion:The association between asthma and PA is complex when the child’s BMI is considered. Results suggest that reduced PAs with respect to respiratory symptom severity, childhood obesity, and functional impairment are important areas for future studies.

Parent-Child Agreement in Report of Nighttime Respiratory Symptoms and Sleep Disruptions and Quality

INTRODUCTION Asthma control requires assessment of nighttime symptoms and sleep disruption. Cognitive and emotional development enables most school-aged children to report nocturnal problems, but providers often rely only on parental report, potentially limiting the comprehensiveness of their assessments and their ability to support the childs emerging efforts at shared management of their illness. This study investigated parent-child concordance in report of nighttime respiratory symptoms, sleep disruption, and quality of sleep in a sample of 9- to 11-year-old children with asthma. Secondarily, similar concordance patterns in an equal number of dyads where the child was asthma free were examined to illustrate the potential influence of asthma. METHOD Parents and children completed 1-week diaries in their homes without confiding in one another. The probability of knowing the childs report on a specific item if the parents report was known was assessed using contingency tables. RESULTS Within the asthma group, parent-child reports differed significantly across all symptoms and sleep parameters. Parents most often reported fewer symptoms and awakenings and better quality of sleep than did their child. Concordance rates were lowest for morning perceptions of tiredness, sleepiness, and alertness in both asthma and non-asthma groups. DISCUSSION Both parents and school-aged children with asthma need to be asked about nighttime asthma symptoms, sleep, and morning perceptions when attempting to evaluate asthma control. Assessment of sleep in all children should include parent and child reports and would benefit by the addition of objective measures.

Measuring Asthma Severity: Instrument Refinement

The focus of this study is to evaluate a brief parent-report instrument, the Severity of Chronic Asthma (SCA) scale, that conforms to the national guidelines for assessing asthma. Convergent validity was found between the SCA and other measures related to asthma severity including an illness severity scale (How Bad is the Asthma?), asthma management scales for parents and children, and the pediatric quality-of-life scale. The SCA is a multidimensional scale with appropriate evidence of reliability and validity that may be a heuristic and effective measure in both clinical practice and research endeavors.