Danita I. Czyzewski

Watch, Discover, Think, and Act: Evaluation of Computer-Assisted Instruction To Improve Asthma Self-Management in Inner-City Children

An interactive multimedia computer game to enhance self-management skills and thereby improve asthma outcomes in inner city children with asthma was evaluated. Subjects aged 6-17 were recruited from four pediatric practices and randomly assigned to the computer intervention condition or to the usual-care comparison. The main character in the game could match the subject on gender and ethnicity. Characteristics of the protagonists asthma were tailored to be like those of the subject. Subjects played the computer game as part of regular asthma visits. Time between pre- and post-test varied from 4 to 15.6 months (mean, 7.6 months). Analysis of covariance, with pre-test scores, age, and asthma severity as covariates, found that the intervention was associated with fewer hospitalizations, better symptom scores, increased functional status, greater knowledge of asthma management, and better child self-management behavior for those in the intervention condition. Interactions with covariates were found and discussed in terms of variable efficacy of the intervention.

Increased gastrointestinal permeability and gut inflammation in children with functional abdominal pain and irritable bowel syndrome.

OBJECTIVES To determine gastrointestinal (GI) permeability and fecal calprotectin concentration in children 7 to 10 years of age with functional abdominal pain and irritable bowel syndrome (FAP/IBS) versus control subjects and ascertain potential relationships with pain symptoms and stooling. STUDY DESIGN GI permeability and fecal calprotectin concentration were measured. Children kept a 2-week diary of pain episodes and stooling pattern. RESULTS Proximal GI permeability was greater in the FAP/IBS group (n = 93) compared with control subjects (n = 52) (0.59 +/- 0.50 vs 0.36 +/- 0.26, respectively; mean +/- SD; P < .001) as was colonic permeability (1.01 +/- 0.67 vs 0.81 +/- 0.43, respectively; P < .05). Gastric and small intestinal permeability were similar. Fecal calprotectin concentration was greater in children with FAP/IBS compared with control children (65.5 +/- 75.4 microg/g stool vs 43.2 +/- 39.4, respectively; P < .01). Fecal calprotectin concentration correlated with pain interference with activities (P = .01, r(2) = 0.36). There was no correlation between GI permeability and pain related symptoms. Neither permeability nor fecal calprotectin correlated with stool form. CONCLUSIONS Children with FAP/IBS have evidence of increased GI permeability and low-grade GI inflammation, with the latter relating to the degree to which pain interferes with activities.

MEASUREMENT OF QUALITY OF WELL BEING IN A CHILD AND ADOLESCENT CYSTIC FIBROSIS POPULATION

Substantial interest in the Quality of WellBeing Scale (QWB) has been shown recently, especially in chronic illness populations.1,2 Designed as a single metric to apply to general populations, the QWB combines physical symptoms and functionality in the areas of mobility, physical activity, and social activity. Although the QWB has been used for policy analysis, its application in clinical populations has been more limited.3

Development of a Health Education Program to Promote the Self-Management of Cystic Fibrosis

The creative challenge of health education for chronic illnesses is the translation of theory-based intervention methods into practical strategies that can be organized into a logical series of learning activities to influence changes in environmental, cognitive, or behavioral factors. A case example describing the development and implementation of a comprehensive health-education intervention for the self-management of cystic fibrosis (CF) is presented. The design of intervention strategies began with an assessment of the educational needs for self-management of CF, followed by specification and validation of particular self-management behaviors. Behavioral and learning objectives then were formulated for each of the self-management behaviors. Constructs from social learning theory considered to be important influences on specified self-management behaviors in CF were identified. Taking into consideration the learning needs of the target population and the practical constraints of the system for providing health care, various intervention methods then were devised based on social learning theory. Lastly, the intervention methods chosen were translated into strategies organized into a series of practical learning activities for CF patients and their families. The process described here should prove useful to others who are planning and developing comprehensive health education programs for self-management of chronic illnesses.

Watch, Discover, Think, and Act: a model for patient education program development

In this report we describe the development of the Watch, Discover, Think and Act asthma self-management computer program for inner-city children with asthma. The intervention focused on teaching two categories of behaviors--asthma specific behaviors such as taking preventive medication and self-regulatory processes such as monitoring symptoms and solving asthma problems. These asthma self-management behaviors were then linked with empirical and theoretical determinants such as skills and self-efficacy. We then further used behavioral science theory to develop methods such as role modeling and skill training linked to the determinants. We matched these theoretical methods to practical strategies within the computer simulation and created a culturally competent program for inner-city minority youth. Finally, we planned a program evaluation that linked program impact and outcomes to the theoretical assumptions on which the intervention was based.

Self-management of cystic fibrosis : a structural model for educational and behavioral variables

One hundred and ninety-nine patients and their primary caregivers at two metropolitan cystic fibrosis centers participated in a clinical trial to evaluate the effectiveness of a health education program designed to help improve self-management skills for the care of CF. The baseline data from the study was used to test a structural model that hypothesized the relationship between educational, behavioral, and health status variables. Controlling for the effects of all other variables, including demographic, self-efficacy (confidence in being able to perform a behavior) was the most important educational factor predicting self-management behavior for monitoring and treating respiratory problems. Knowledge about the management of CF was only related to the ability of caretakers to apply coping skills to problems associated with CF. The more caretakers reported performing monitoring behaviors the more likely they were to report performing self-management treatment behaviors. The findings suggest that educational interventions that focus on increased knowledge alone are not likely to be effective in improving self-management behavior for CF. Based on the structural model analyses, it is recommended that educational programs for CF patients and families address increased self-efficacy and improved monitoring skills to influence the improvement of self-management treatment for CF.

Characteristics of Pain and Stooling in Children with Recurrent Abdominal Pain

Objective:To collect symptom data longitudinally from children with recurrent abdominal pain (RAP) and control (asymptomatic) children. Patients and Methods:Children with RAP (n = 77) and controls (n = 33) 7 to 10 years of age completed daily diaries for 2 weeks tracking pain frequency and severity, how often the pain interfered with activities, and stooling pattern. Results:RAP children reported a greater number of pain episodes and greater pain severity than control children. Pain commonly was reported to be in the periumbilical area and occurred evenly across the day in both groups. However, the pain interfered with activity more often in the RAP group. There was a positive relationship between pain and interference with activities. Both groups reported stool changes, but there were no differences between groups in stool character (eg, hard, mushy). For both groups, the presence of watery stool was related positively to pain. Of children with RAP, 65% could be categorized as having irritable bowel syndrome, whereas 35% were classifiable as having functional abdominal pain according to the pediatric Rome II criteria. Conclusions:To the best of our knowledge, this is the first longitudinal report of symptoms in children with RAP compared with controls. These data demonstrate that there is considerable overlap between children with RAP and control children on a number of items commonly obtained in the history (eg, pain location, timing, stooling pattern). Most children with RAP could be characterized as having irritable bowel syndrome. The relationship between pain reports and interference with activities substantiates the need to deal specifically with the abdominal pain to decrease disability. The relationship between pain and watery stools requires further study.

Creation and Initial Evaluation of a Stool Form Scale for Children

OBJECTIVE To develop a pediatric stool form rating scale and determine its interrater reliability, intrarater reliability, and agreement among pediatric gastroenterologists. STUDY DESIGN An ordinal stool scale with 5 categorical stool form types was created on the basis of the Bristol Stool Form Scale, and 32 color 2-dimensional stool photographs were shown to 14 pediatric gastroenterologists. Each gastroenterologist rated the stool form depicted in each photograph with the modified stool scale. Ten gastroenterologists agreed to rerate the stool form depicted in each photograph a minimum of 6 months after the first rating. RESULTS A total of 448 ratings were completed; 430 (94%) of all ratings were within at least 1 category type of the most common (modal) rating for each photograph. Eight (25%) stool photographs had complete agreement among all raters. Interrater and intrarater reliability was high with a single measure intraclass correlation of 0.85 (95% confidence interval: 0.78-0.91; P<.001) and 0.87 (95% confidence interval: 0.81-0.92; P<.001), respectively. CONCLUSION A modified pediatric Bristol Stool Form Scale provided a high degree of interrater reliability, intrarater reliability, and agreement among pediatric gastroenterologists.

LONG-TERM ADJUSTMENT ISSUES IN PATIENTS WITH EXSTROPHY

PURPOSE We explored the psychological adjustment of children with bladder or cloacal exstrophy. MATERIALS AND METHODS We assessed 29 subjects with a mean age plus or minus standard deviation of 7.8 +/- 3.97 years using age appropriate standard psychological instruments. Psychological adjustment scores in the exstrophy group were compared to the norms of the various instruments. Subjects were divided into dichotomous groups according to several medical and demographic factors. For each factor the differences between the means of the 2 groups on the outcome variables were calculated using a t test. RESULTS Children with exstrophy perceived their appearance more positively than the norm. Older children performed more poorly than younger children in adaptive behavior, specifically in skills related to functioning in school. Children who achieved continence after age 4 years were more likely to have problems with acting out behavior. There were no differences in adjustment in boys versus girls, bladder versus cloacal exstrophy, type of continence strategy or gender reassignment versus no reassignment. CONCLUSIONS Children with exstrophy did not have clinical psychopathology. Differences existed in adaptive and acting out behavior rather than depression or anxiety, suggesting that improved outcomes may be achieved through a focus on normal adaptation rather than on potential psychological distress.

Pain Symptoms and Stooling Patterns Do Not Drive Diagnostic Costs for Children With Functional Abdominal Pain and Irritable Bowel Syndrome in Primary or Tertiary Care

OBJECTIVE. The objectives of this study were to (1) compare the cost of medical evaluation for children with functional abdominal pain or irritable bowel syndrome brought to a pediatric gastroenterologist versus children who remained in the care of their pediatrician, (2) compare symptom characteristics for the children in primary versus tertiary care, and (3) examine if symptom characteristics predicted the cost of medical evaluation. METHODS. Eighty-nine children aged 7 to 10 years with functional abdominal pain or irritable bowel syndrome seen by a gastroenterologist (n = 46) or seen only by a pediatrician (n = 43) completed daily pain and stool diaries for 2 weeks. Mothers provided retrospective reports of their childrens symptoms in the previous year. Cost of medical evaluation was calculated via chart review of diagnostic tests and application of prices as if the patients were self-pay. RESULTS. Child-reported diary data reflected no significant group differences with respect to pain, interference with activities, or stool characteristics. In contrast, mothers of children evaluated by a gastroenterologist viewed their children as having higher maximum pain intensity in the previous year. Excluding endoscopy costs, cost of medical evaluation was fivefold higher for children evaluated by a gastroenterologist, with higher cost across blood work, stool studies, breath testing, and diagnostic imaging. Symptom characteristics did not predict cost of care for either group. CONCLUSIONS. Despite the lack of difference in symptom characteristics between children in primary and tertiary care, a notable differential in cost of evaluation exists in accordance with level of care. Symptom characteristics do not seem to drive diagnostic evaluation in either primary or tertiary care. Given the lack of differences in child-reported symptoms and the maternal perspective that children evaluated by a gastroenterologist had more severe pain, we speculate that parent perception of child symptoms may be a primary factor in seeking tertiary care.