Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one's most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2-11 years) living with UC.

Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5-11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2-4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis.

Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life.

Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8-11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8-11 years age group.

To extend existing research on the pain burden experienced by youth with inflammatory bowel disease (IBD) by examining the complexity of psychosocial factors involved in pain-related distress.

Parents completed measures of family stress and their child's pain-related expressions of distress and coping. Youth with IBD rated their depressive symptoms (n = 183 dyads). Mediation analyses were performed using regression-based techniques and bootstrapping.

Greater family stress was positively related to children's pain-related expressions of distress and passive coping. Significant indirect effects were found in the relationship between family stress and expressed pain-related distress through parent-reported passive coping, depressive symptoms, and both passive coping and depressive symptoms sequentially.

Results suggest that family stress can place children at risk for greater expressed pain-related distress through effects on coping and depressive symptoms. Addressing psychosocial difficulties is important for closing the gap between disability and health in youth with IBD.

Anxiety is linked with adverse health-related outcomes and increased health-seeking behaviors among patients with chronic illness. Yet, this relationship has received little attention in pediatric inflammatory bowel disease. The aim of this study was to examine whether anxiety symptoms predicted youth at increased risk for repeated disease relapse and greater gastrointestinal health care use over the subsequent 12 months.

Eighty-six pediatric patients aged 11 to 18 years (M = 14.7, SD = 2.0), and their caregivers completed a validated anxiety questionnaire during a gastrointestinal specialty appointment (baseline). Medical records were reviewed for the subsequent year to record the number of disease relapses and gastrointestinal health care services and generate disease activity scores at baseline and 12 months. Analysis of variance was used to examine anxiety levels between those who experienced ≤1 versus ≥2 disease relapses. Poisson regressions were used to model the relationship between child- and caregiver-reported anxiety and health care use, controlling for disease activity.

The sample was predominantly white (81%) and male (56%). Patients with higher anxiety at baseline (M = 19.6; SD = 13.7) had more frequent (≥2) disease relapses compared with those with lower anxiety at baseline (M = 12.6; SD = 10.3). Higher anxiety, irrespective of reporter, also predicted greater total gastrointestinal health care use (P < 0.01). This included hospital-based interventions (P < 0.01), but not office encounters or outpatient endoscopic procedures. Findings remained significant after controlling for disease severity (P < 0.05).

Assessment of anxiety may be one mechanism by which to identify those youth who are most vulnerable for disease exacerbation and costly interventions in the near future.

Data suggest physicians poorly assess disease-specific literacy and transition readiness in pediatric patients with inflammatory bowel disease (IBD). We piloted an electronic, interactive iPad quiz game that could be used in a clinical setting, with the aims of measuring IBD-related knowledge, and concomitant mood and quality of life (QOL) in a pediatric population.

Two pediatric IBD clinics developed and tested 2 versions of "Emma." Patients between 10 and 18 years of age played Emma during an office visit. Each patient answered 12 randomly selected disease-related questions and 4 mood-related questions.

Sites 1 and 2 tested Emma v1 between May and August 2013. Emma v2 was tested from November 2013 to January 2014 and from September 2013 to January 2014. A total of 56 patients played Emma v1, whereas 60 played Emma v2. In Emma v2, 73.1% of questions were answered correctly. Patients recognized signs of IBD (88%), causes of diarrhea in addition to IBD (79.4%), and could define lactose intolerance (95.8%), but fewer patients understood serological testing used for disease monitoring (68%) or knew that magnetic resonance enterography did not involve radiation (22.9%). Patients tended to report good functioning in the areas of energy, mood, anxiety, and school-related QOL. Patients with Crohn disease, however, reported higher stress levels compared with patients with ulcerative colitis; older patients reported lower energy levels, and postsurgical patients reported lower QOL.

The Emma iPad game has the potential to evaluate gaps in IBD knowledge, assess emotional functioning, and increase patient engagement as a transition tool in the clinical setting.

Children and adolescents diagnosed as having Crohn disease (CD), a type of inflammatory bowel disease (IBD), have increased vulnerability for anxiety symptoms that may be related to disease-related processes. The aims of this article are 3-fold: to report the proportion of pediatric patients with CD whose self-reported anxiety symptoms are indicative of distress, to describe the constellation of anxiety symptoms, and to examine the relation between anxiety and disease symptoms.

Retrospective medical chart review was performed for 93 youths with CD (ages 9-18 years) who had completed the Screen for Child Anxiety Related Disorders during their gastroenterology visit. Medical records were reviewed for demographic and disease characteristics. the Harvey-Bradshaw Index (HBI) was used as a measure of CD activity.

Thirty percent of the youths reported experiencing elevated anxiety symptoms (Screen for Child Anxiety Related Disorder score >20), and 50% had scored above the cutoff in 1 or more anxiety domains, with school anxiety, general anxiety, and separation anxiety symptoms reported most frequently. Youth rated with moderate/severe disease activity on the HBI (n = 4) self-reported more anxiety symptoms compared with youth with inactive disease (n = 78, P = 0.03). Greater school anxiety was significantly associated with decreased well-being (P = 0.003), more abdominal pain (P < 0.001), and the number of loose stools (P = 0.01). Having extraintestinal symptoms was significantly associated with higher somatic/panic anxiety (P = 0.01).

Implementing a brief anxiety screen in tertiary pediatric settings may be one approach to identify young patients with CD in distress. Health care providers should consider periodic assessment of school anxiety among youth with CD.

The objective of the present investigation was to evaluate the factor structure of the Children's Depression Inventory (CDI) in adolescents with inflammatory bowel disease (IBD) to better understand the CDI's psychometric properties in a medically complicated population. An exploratory factor analysis was performed on CDI data collected from a clinical sample of 191 youth with IBD, aged 11 to 17 years. Exploratory factor analysis with quartimax rotation yielded 3 factors: mood, behavioral/motivational, and somatic complaints. Only the somatic factor (ie, fatigue, sleep, decreased appetite, and worry about aches and pain) showed a significant positive correlation with IBD severity. The CDI holds promise as a brief measure for the assessment of depressive features psychometrically independent of IBD severity and common steroid treatments as well as of nongastrointestinal specific somatic complaints in a sample of adolescents with IBD. Continued work in this area of research appears promising in honing the assessment of depressive and somatic symptoms in youths with IBD.

The objective of this study was to examine the relative contributions of both parental and adolescent functioning to family functioning in adolescent patients with inflammatory bowel disease (IBD) and their families. Participants were 45 adolescents (27 male, 18 female) 13-17 years old (M = 15.41 years, SD = 1.32) with IBD and their parents. Families completed measures of patient behavioral functioning and depression, parent distress and family functioning. Disease severity assessments were completed via data provided by patients' gastroenterologists. Results indicated that parent-reported patient behavioral problems accounted for a significant 26% of variance in family functioning. Post-hoc analysis revealed that externalizing behavior problems accounted for the majority of this variance compared to internalizing behavior problems. These results suggest that externalizing problems may have a more significant impact on these families than previous research indicates. Moreover, externalizing behaviors may significantly impact family adaptation and should be taken into consideration during routine clinical care. Further research is needed to replicate and expand upon these findings.

PURPOSE. Adolescents with inflammatory bowel disease (IBD) may be at heightened risk for developing anxiety and depression. This cross-sectional pilot study examined the relationship between anxiety and depression and health-related behaviors. METHODS. Thirty-six adolescents with diagnosed IBD, ages 12-17, and their parents were recruited from two pediatric gastroenterology medical centers. RESULTS. Clinical levels of anxiety (22%) and depressive symptoms (30%) were reported by patients. Regression analyses revealed that IBD-specific anxiety was significantly associated with greater utilization of medical services and worsened psychosocial functioning. PRACTICE IMPLICATIONS. Results provide preliminary support that IBD-specific anxiety may play an important role in disease management, yet concerns are rarely systematically assessed by health professionals.

This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL.

One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs).

Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning.

Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL.

Inflammatory bowel disease is a significant illness among young people, requiring some of them to get an ostomy; however, there is minimal research that seeks to understand the meanings young people assign to their inflammatory bowel disease experiences. The purpose of this phenomenological study was to arrive at an understanding of the lived experiences of young persons with inflammatory bowel disease and an ostomy. Six young adults (19-24 years of age) diagnosed with ulcerative colitis, and who all had had an operation for a temporary ostomy, participated in individual open-ended interviews. "Concealing and Revealing the Self," which emerged as the essence of young adults' experiences, referred to how much they chose to present their "true" self to others. The concealment of their true self was, in part, due to the symptoms they experienced and the impact that the illness had on their changing bodies. It was not until they were no longer experiencing the symptoms and their bodies returned to normal that they were able to reveal themselves and have a true sense of confidence. Findings also reveal that young persons with ulcerative colitis and an ostomy experience many uneasy feelings that affect their sense of self, which nurses need to acknowledge.

To examine for differences in and predictors of health value/utility scores in adolescents with or without inflammatory bowel disease (IBD).

Adolescents with IBD and healthy control subjects were interviewed in an academic health center. We collected sociodemographic data and measured health status, personal, family, and social characteristics, and spiritual well-being. We assessed time tradeoff (TTO) and standard gamble (SG) utility scores for current health. We performed bivariate and multivariable analyses with utility scores used as outcomes.

Sixty-seven patients with IBD and 88 healthy control subjects 11 to 19 years of age participated. Among subjects with IBD, mean (SD) TTO scores were 0.92 (0.17), and mean (SD) SG scores were 0.97 (0.07). Among healthy control subjects, mean (SD) TTO scores were 0.99 (0.03) and mean (SD) SG scores were 0.98 (0.03). TTO scores were significantly lower (P= .001), and SG scores trended lower (P= .065) in patients with IBD when compared with healthy control subjects. In multivariable analyses controlling for IBD status, poorer emotional functioning and spiritual well-being were associated with lower TTO (R(2)=0.17) and lower SG (R(2)=0.22) scores.

Direct utility assessment in adolescents with or without IBD is feasible and may be used to assess outcomes. Adolescents with IBD value their health state highly, although less so than healthy control subjects. Emotional functioning and spiritual well-being appear to influence utility scores most strongly.

To extend development of a pediatric inflammatory bowel disease (IBD) health-related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.

Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.

We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.

This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.

Psychological factors affecting pediatric inflammatory bowel disease, intervention and other therapeutic resources are reviewed.

Children with inflammatory bowel disease are at risk for more difficulties in psychosocial functioning than healthy children, particularly depression, anxiety and social difficulties. Psychosocial difficulties are generally similar to those found in other pediatric chronic illnesses and are clinically significant in only a subset of those with inflammatory bowel disease. Conflicting results have been reported for the areas of family dysfunction and body image, and few studies have been published in the areas of stress/coping and eating disorders. One pilot study suggests psychotherapy is effective for depressed adolescents with inflammatory bowel disease.

The scant existing research limits conclusions about which children are most at risk for experiencing problems. Future research should investigate a range of psychosocial outcomes and risk factors for developing problems. Prevention and intervention strategies aimed at improving psychosocial functioning in children with inflammatory bowel disease should be developed and evaluated.

The purpose of this article is to review research on psychosocial functioning in pediatric inflammatory bowel disease (IBD) and to provide recommendations for future research.

A literature search was conducted using the MEDLINE and PsychInfo computerized databases and bibliographies of relevant articles.

Compared with healthy children, children with IBD are at greater risk of difficulties behavioral/emotional functioning, particularly depression and anxiety, social functioning, and self-esteem. Conflicting results have been reported for the areas of family dysfunction and body image, and few studies have been published in the areas of stress and coping and eating problems. Psychosocial difficulties are clinically significant in only a subset of those with IBD and are generally similar to those found in other pediatric chronic illnesses.

The scant existing research limits conclusions about which children are most likely to experience problems. Future research should investigate a range of psychosocial outcomes, including developmentally appropriate outcomes for adolescents, and risk factors for developing problems. Prevention and intervention strategies aimed at improving psychosocial functioning in children with IBD should be developed and evaluated.

The purpose of this study was to compare the self-reported psychosocial functioning of children with inflammatory bowel disease (IBD) to that of healthy children in the areas of behavioral/emotional functioning, social competence, self-esteem, stress coping strategies, and social support.

Participants were 50 children with IBD diagnosed at least 1 yr before enrollment, and 42 healthy comparison children aged 11-17 yr. They completed a series of well-validated questionnaires assessing psychosocial functioning. The treating gastroenterologists of participating children with IBD completed the Pediatric Crohn's Disease Activity Index during a clinic visit within a week of completion of the questionnaires.

Mean scores fell in the normal range on all normed measures, and there were no significant differences between group means on any of the measures. A subset of 20% of children with IBD reported clinically significant behavioral/emotional symptoms, even a year after diagnosis, which was similar to results found in the healthy comparison group. Most children with IBD were in remission or had mild disease activity at the time of the study. Neither past nor current disease factors differentiated those with significant emotional problems.

These results suggest that most children with currently mild IBD who have been diagnosed for at least a year report normal psychosocial functioning that is similar to that of healthy children. A subset of these children report significant behavioral/emotional difficulty, and future research should seek to identify which children are most at risk for these problems and how best to intervene.

To describe the reported health-related quality of life (HRQOL) in children and adolescents with inflammatory bowel disease (IBD) after attending an IBD summer camp.

A prospective analysis of quality of life was completed at an overnight camp that was exclusively for patients with IBD, which was sponsored by the Crohn's and Colitis Foundation of America. The IMPACT-II questionnaire (Canada and United States) and the State-Trait Anxiety Inventory for Children were administered to the campers at the beginning and at the end of a 1-week camp to assess HRQOL and anxiety. The IMPACT-II questionnaire consists of 35 questions measuring 6 quality-of-life domains (i.e., bowel domain, systemic symptoms, emotional functioning, social functioning, body image, and treatment/interventions). The State-Trait Anxiety Inventory for Children consists of 2 different 20-item sets of questions. One set assesses state anxiety, and the other, trait anxiety. A repeated-measures multivariate analysis of variance was performed to determine the differences between scores attained before and after camp on the IMPACT-II questionnaire and in each of its domains. Paired sample t tests were performed on state and trait anxiety before and after camp.

A total of 125 individuals consented to participate, but 61 patients (50 girls and 11 boys; age range, 9 to 16 y) completed the IMPACT-II questionnaire in full. Of those 61 patients, 47 had Crohn's disease and 14 had ulcerative colitis. There was statistically significant improvement between the mean (+/-SD) precamp total score (172.95 +/- 36.61) and the mean postcamp total score (178.71 +/- 40.97; P = 0.035), bowel symptoms scores (P = 0.036), social functioning scores (P = 0.022), and treatment interventions scores (P = 0.012). No difference was found between anxiety scores before and after camp on either the state or trait anxiety inventories (n = 55; P > 0.05).

Overall, HRQOL improved in children after attending IBD summer camp. This exploratory study suggests that contributing factors for these improvements may be an increase in social functioning, a better acceptance of IBD symptoms, and less distress regarding treatment interventions, suggesting that a camp that is specifically designed for children with IBD may normalize the chronic illness experience. However, future research using a multimodal measurement approach is warranted to support these conclusions.

This study assessed the rates of depressive symptoms in older children and adolescents with inflammatory bowel disease (IBD) and the associations between depressive symptoms and IBD disease characteristics.

One hundred and two youths (aged 11-17 years) with IBD seen consecutively in a gastroenterology clinic were screened for depressive symptoms using the Children's Depression Inventory (CDI). Subjects with CDI scores > or = 12 were evaluated for current psychiatric diagnoses using the Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version (K-SADS-PL). Disease characteristics examined included IBD type, duration, current severity, course, age at diagnosis and steroid treatment.

Of the total sample, 25 (24.5%) had a CDI score > or = 12, consistent with clinically significant depressive symptoms. Nineteen of 25 qualified subjects participated in the K-SADS-PL semi-structured interview and 16 of 19 met criteria for major or minor depressive disorder. Mean CDI scores positively correlated with age at IBD diagnosis but not with IBD type, duration or course. Youths with moderate/severe current IBD-related symptoms had significantly higher mean CDI scores than those with inactive disease activity. Anhedonia, fatigue and decreased appetite were selectively correlated with IBD disease severity. Subjects on steroids were more likely to have CDI scores > or = 12, and those with such scores were on higher doses of steroids than subjects without clinically significant depressive symptoms (both P values < 0.05).

These findings support the recommendation that adolescents with IBD in outpatient medical care settings, particularly older adolescents and those on steroids, should be screened for depression.

Impairment of growth and malnutrition are significant complications of inflammatory bowel disease (IBD) in pediatric patients. Since this topic was last reviewed in these pages (), a number of studies have further explored the epidemiology and pathogenesis of these nutritional complications of IBD in an effort to provide more effective interventions to prevent the long-term consequences of chronic nutrient deficiencies in childhood. In addition, during the past 15 years, the use of selected nutrients and microorganisms (probiotics) as primary or adjunctive therapy for the treatment of IBD has become an emerging area of great interest. The following is a Clinical Report from the Nutrition and Inflammatory Bowel Disease Committees of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition.

The treatment of children and families affected by pediatric IBD requires an awareness of the diverse psychobiologic effects of the disorder over the course of child, adolescent [53], and adult development [52]. Optimal treatment requires careful coordination of various medical, educational, and rehabilitative services and concerned, empathetic, continuity of care by knowledgeable clinicians [4]. In many cases, this care must also include individual psychotherapeutic work with affected youngsters at crucial junctures to help deal with the social and psychological stresses of IBD, as well supportive casework for parents and siblings.

Previous studies have suggested impaired psychosocial adjustment in children and adolescents with inflammatory bowel disease (IBD). We examined 62 subjects referred to a regional Pediatric Gastroenterology Clinic with IBD or functional gastrointestinal (FGI) complaints. Characteristics of the clinic include a unified team approach, regularly scheduled appointments at 3-month intervals, proactive medical care emphasizing maintenance of full functioning, and close medical-surgical interaction (joint clinics). A research assistant administered a questionnaire regarding children's perceptions of their illness, as well as the Child Depression Inventory (CDI), the Piers-Harris (PH) test of self-concept, and the Child Behaviour Checklist (CBCL). The 36 children with IBD (25 Crohn's disease, 11 ulcerative colitis, mean age 13.3 +/- 3.0 years) were compared with 26 patients with FGI complaints (16 recurrent abdominal pain, 10 functional megacolon, mean age 11.4 +/- 2.8 years). The scores on the standardized tests were not clinically significant for either group. In comparison, however, children with IBD were less depressed and had fewer behaviour problems than the FGI group. Surprisingly, only 19% (7 of 36) of children with IBD described their illness as a problem to them, compared with 65% (17 of 26) of children with FGI symptoms. The latter children also considered themselves significantly sicker than did those with IBD. We conclude that normal psychosocial adjustment is possible in pediatric patients with IBD. We speculate that this group benefitted from the professional supports that our clinic specifically provides to patients with IBD. The FGI group may have suffered from a lack of such professional supports, as well as from the absence of a specific diagnosis.

To examine the associations of somatic complaints with DSM-III-R-defined depression, anxiety disorders, conduct disorder, oppositional defiant disorder, and attention-deficit hyperactivity disorder in a population-based sample of children and adolescents.

Data from 4 annual waves of interviews with 9- to 16-year-olds from the Great Smoky Mountains Study were analyzed.

Overall, somatic complaints were strongly associated with emotional disorders in girls and with disruptive behavior disorders in boys. For girls, stomach aches and headaches together and musculoskeletal pains alone were associated with anxiety disorders. For boys, stomach aches were associated with oppositional defiant disorder and attention-deficit hyperactivity disorder. Musculoskeletal pains were associated with depression in both girls and boys.

There were gender-, illness- and complaint-specific associations between somatic complaints and psychopathology. It appears likely that there are differences in the psychobiological processes underlying these associations in boys and girls. Clinical recommendations include screening children and adolescents with persistent complaints of headaches, stomach aches, or musculoskeletal pains for psychiatric disorders with an awareness that gender may affect the type of psychopathology associated with the somatic complaints.

To identify family interactions associated with psychosocial outcome of epilepsy surgery, to design interventions to improve patient outcome.

A cross-sectional, case series study of relations among observed family behavior and psychosocial outcome of 43 patients after temporal lobectomy. Videotaped family behavior during family discussion tasks was rated for predominant family affect, affective range, and support of patient autonomy. Multiple regression analyses tested the relation of observed family characteristics to outcomes, controlling for seizure control and other psychological and disease characteristics.

Predominant family affect predicted patients' social adjustment independent of postoperative seizure status and other disease characteristics. The relation between predominant affect and social adjustment was stronger among patients with persisting complex partial seizures (CPSs; r = -0.91), versus patients with auras (r = -0.38) and seizure-free patients (r = -0.28; multiple R = 0.71; p < 0.05). Families with a positive affective climate supported patients' autonomy.

Two potential targets were identified for family intervention to improve postsurgical social adjustment: (a) family interactions that support a predominantly positive affective climate, and (b) family interactions that support patient autonomy. These findings are consistent with findings in normal and other clinical populations. They identify specific interactions that give rise to positive versus negative affective climate and support versus undermining of autonomy. These results lay the groundwork for intervention studies targeting these specific family interactions. Such intervention studies would clarify the direction of effect of the observed relationships and would test the efficacy of family intervention for improving psychosocial outcomes for patients with epilepsy.

Defining and measuring quality of life is a relatively new dimension of health care for many clinicians. The traditional method of evaluating clinical status and response to treatment has been to look at disease-specific symptoms, global assessments (e.g., impressions of the good, better, or worse condition of a patient), days missed at school, and a variety of disease activity scores. These impressions and techniques may or may not reflect how patients are functioning day to day and how they feel about the illness. To address these issues, health-related quality of life questionnaires have been developed to measure the functional effect of an illness and its treatment on a patient, as perceived by the patient. There are four broad domains that are considered part of a health-related quality-of-life questionnaire: 1) physical and occupational function, 2) psychologic state, 3) social interaction, and 4) somatic sensation. In the case of children, the perception of parents or caretakers may be added to complete the picture. Significant social and psychiatric problems have been described in children with IBD, including absenteeism from school, depression, suicide, and major disruption of family patterns. To understand fully the impact of inflammatory bowel disease and its treatment on patient and family function requires one or more quality-of-life instruments that are sensitive to the full range of symptoms, growth and development, and response (including side effects) to many new therapies.

Inflammatory bowel disease in children and adolescents often leads to an extremely complex somatic and psychiatric situation. The psychological effect of inflammatory bowel disease warrants further investigation, especially concerning salutogenetic factors that may lead to good mental health despite bad somatic conditions.

These studies used a multimethod design comprising both semiquantitative measures, such as rating scales and questionnaires, and qualitative in-depth interviews with both the child and his or her parents. Clinical comparison groups of matched children with diabetes and chronic tension headaches and matched children without chronic physical disease were examined.

Inflammatory bowel disease often leads to psychiatric sequelae. Emotional disorders, especially depression and anxiety symptoms, were found to be common. Self-esteem was lowered. A subgroup of children with good mental health despite bad somatic conditions was found. They exhibited certain characteristics, including good knowledge of the disease, an internal locus of control, a good family climate, and an open social network.

This study shows that the well-being of a chronically ill child depends not only on the course of the physical disease but also on the psychological and social complications that often seem to accompany a disease of this kind. The importance of taking good care of the psychosocial aspects of inflammatory bowel disease within the comprehensive treatment program is discussed.

In the past, quality of life was primarily assessed using objective measurements of the condition of the patient. Today, most quality-of-life measurements include several aspects regarding the patient's opinions and feelings. There has been an extensive development of quality-of-life instruments particularly in adults, including those for people with inflammatory bowel disease (IBD). However, only a few instruments, mostly questionnaires, have been developed for the pediatric population. It has been noted, even in young patients with IBD, that there is reduced self-esteem and more anxiety and depression. Altogether, these are important aspects for early measurement of psychosocial functioning and possibly intervention during the treatment of children with IBD.

For the current study, an instrument was developed for young children aged 5 years or more in which a computer-based animated program was used to measure quality of life in children with inflammatory bowel disease. The instrument was designed to be similar for boys and girls with no reference to racial identity. In addition, it was culturally acceptable for all Dutch children. The program was in the form of a story of a bear and a clown playing in an attic of an old house where they come across many objects with which they play and where many adventures occur. All 35 questions were interwoven in this story.

The animated computer program was well accepted and easily used by 16 children between the ages of 5 and 12 in a small pilot study. In those older than 11 years, another approach is probably necessary, using an age-appropriate animated program.

The computer program can easily be used in an outpatient setting and thus ensures that quality-of-life measurement will become a routine part of a medical visit.

Health-related quality of life (HRQOL) in children with inflammatory bowel disease is clearly reduced in the physical as well as in the psychological and social functioning domains. However, very few studies of these children have been performed from a quality-of-life perspective. Multicenter studies on HRQOL are needed to answer questions about the impact of Crohn's disease and ulcerative colitis and their treatment and complications on HRQOL in children and adolescents and their association with outcome. This article describes perspectives from which quality of life studies may be performed, potential uses of HRQOL measures, and issues that should be accounted for in designing multicenter clinical studies on this topic.

An exploratory, qualitative study with tenets from grounded theory was used to elicit detailed descriptions of adolescents' chronic illness experiences. The philosophy of symbolic interactionism guided this study. Understanding the adolescents' experiences included exploring adolescents' perspectives of the following: (1) what it is like to have a chronic illness, and (2) how they deal with having a chronic illness. A sample of 23 adolescents, 13 to 16 years of age, and diagnosed with either diabetes, asthma, arthritis, Crohn's disease, or ulcerative colitis participated. Data collection involved the adolescents participating in open-ended interviews. The constant comparative method was used to analyze all data from the interviews. The findings revealed that having a chronic illness made life more difficult for the adolescents. Adolescents experience extra effort, restriction, pain, and additional worries because of having a chronic illness. However, adolescents also clearly had ways to help them deal with their illness. These strategies and recommendations for practice and future research are discussed.

To describe chronically ill adolescents' perceptions of how health professionals can best care for chronically ill adolescents.

A qualitative study with tenets from grounded theory, including theoretical sampling and the constant comparison of data.

Participants' homes of private hospital offices.

Twenty-three adolescents, 13 to 16 years of age, who were diagnosed with either diabetes, asthma, arthritis, Crohn's disease, or ulcerative colitis.

Open-ended, in-depth interview method.

Eight themes emerged: (1) treat me like a person; (2) try to understand; (3) don't treat me differently; (4) give me some encouragement; (5) don't force me; (6) give me options; (7) have a sense of humor; and (8) know what you are doing.

Health professionals need to adopt an overall approach described as careful maneuvering when caring for adolescents with chronic illness. This approach involves the health professional having sound knowledge and the ability to guide adolescents confidently and sensitively in the management of their illness.

To examine the concurrent and criterion validity of three instruments used to measure emotional and behavioral problems among children with chronic illness.

The Personal Adjustment and Role Skills Scale (PARS III), Child Behavior Checklist (CBCL), and Columbia Impairment Scale (CIS) were compared with each other and with structured interview-derived psychiatric diagnoses in 116 chronically ill children, aged 9 to 18 years. Three cutoff scores were used for each measure.

The measures had good concurrent validity despite only moderate agreement with each other. Their criterion validity was only fair: levels of sensitivity were fair at low cutoffs and poor at standard and high cutoffs; specificity and positive predictive values rose from moderate at low cutoffs to high at standard and high cutoffs. The agreement between the scales and a mental disorder diagnosis was only moderate at any of the cutoff points.

Each of these measures has significant limitations. Both the CBCL and the PARS III appear to measure similar constructs but are likely to underidentify medically ill children with comorbid psychiatric problems. Consideration of global functioning across domains, with a measure such as the CIS, might provide an alternative approach to behavioral and symptom checklists in the assessment and management of children with chronic conditions.

IBD is one of the most significant chronic diseases afflicting children and adolescents. As in adults, UC and CD constitute the two major disease entities, with many of the characteristics of these two diseases being similar in adults and children. With technical advances, a complete endoscopic examination of the colon and terminal ileum can be performed in most children without difficulty. There are, however, a number of aspects of the presentation, course, and management of these diseases that are unique to the pediatric population. Because the impact of inadequate nutrition is much greater in the growing child than in adults, growth failure is a common, serious complication of malnutrition in this population. The psychological impact of a chronic illness on both the developing child and the family can also be significant. The management of this population is further complicated by the lack of adequate studies that assess not only the effect of a medical or surgical therapy on disease activity, but also address the issues of growth and pubertal development. It has been a challenge to extrapolate data from adult studies to the pediatric population. The management of children and adolescents requires a critical understanding of the differences between pediatric and adult patients to maximize growth potential and minimize longterm sequelae of treatment. After a long period of limited controlled studies, however, collaborative efforts are underway to investigate most aspects of pediatric IBD, and we look forward to exciting advances toward the optimal management of children and adolescents with IBD.

Of thirty six children with new-onset inflammatory bowel disease given a Kiddie-SADS interview, five children were depressed and ten had some depressive symptoms. Depressed children had less severe illness, and were more likely to have a maternal history of depression, more life events, and families characterized by less cohesion and more conflict.

The mothers of 72 children and adolescents with inflammatory bowel disease (IBD) and 44 mothers of children and adolescents with cystic fibrosis (CF) were given A-SADS interviews. Fifty-one percent of IBD mothers and 41% of cystic fibrosis mothers had a lifetime history of depression. More IBD than CF mothers had a history of suicide gestures or attempts, and were more likely to have a history of obsessive compulsive disorder. However, CF mothers were more likely to have experienced panic attacks.

Children with inflammatory bowel disease and their parents were assessed for DMS-III diagnoses, maternal attachment, marital relationship, life stresses, illness severity and cognitive/affective profile. Eleven of 15 children and 21 of 27 parents had psychiatric diagnoses. Three children were suicidal. Thirteen of 15 mothers had insecure attachment. Marital difficulties and medical severity correlated with life stress. The higher prevalence of psychiatric disorders than epidemiologically and of insecure attachment suggest at-risk relationships.

Psychiatric disorders and behaviour problems were found to be commoner in children and adolescents with inflammatory bowel disease (IBD) than in matched comparison groups with tension headache and diabetes as well as in healthy children. Depression, anxiety and low self-esteem were common. Many children denied their problems. This may be due to the type of illness, its social consequences and the embarrassment experienced by the children. Discrepancies were found between the children's and their mothers' replies. These results are discussed in terms of their implication for paediatric practice.

Depression is a major complication of medical illness in adults and is increasingly being recognized as a complication of pediatric illness. The author reviews issues in the assessment and diagnosis of depression in pediatric illness and reviews recent studies on the prevalence of and risk factors for depression in different illnesses. Pediatric illness may be a major stressor that precipitates depression in children vulnerable because of life events, family dysfunction, or predisposition to affective illness.

Twenty consecutive patients between 9 and 18 years of age with inflammatory bowel disease (IBD) [ulcerative colitis (UC) or Crohn's disease (CD)] were assessed for the presence of psychiatric disorder. The prevalence of psychiatric disorder using the DSM-III-R criteria (Diagnostic and Statistical Manual 3rd ed., revised), was 60% in the IBD group compared to 15% in a matched control group (p = 0.009). The psychiatric disturbances were mainly depressive or anxiety disorders. The IBD children also scored significantly higher (p = 0.0028) on the Child Behaviour Checklist (CBCL) which was completed by the mothers. This indicates more behavioural problems in the IBD group than in the control group. The present study suggests that children and adolescents with IBD comprise a population at high risk for developing a psychiatric disorder that may not be overt but nevertheless plays an important interactive role in the course of the disease.

The objectives of this study were to 1) review mastocytosis in terms of the behavioral pathology in adults, and 2) to assess a group of pediatric patients with mastocytosis to determine if similar behavioral pathology is evident.

Twelve children ages two to eleven referred to the NIH, a tertiary referral center for mastocytosis, were studied. Questionnaires were mailed for assessment of the child's behavior: parents completed the Childhood Behavior Checklist (CBCL) and children four years of age or more were evaluated by their teachers via the Child Behavior Checklist-Teacher Report form. Scores were compared to published normative data and to published data from other medically ill pediatric groups. Pathology was defined as present if the child scored greater than two standard deviations above published age and sex-matched norms.

Mean factor scores on the CBCL for children with mastocytosis did not differ significantly from published norms, but individual ratings by parents were significantly elevated in four of ten subjects. Moreover, CBCL ratings by parents were similar to those seen in other medically ill pediatric groups. None of the teacher ratings were in the pathological range.

The results of this study indicate that no clear excess of pathology exists in children with mastocytosis. Individual children treated with antihistamines for mastocytosis seem to have a nonspecific increase in behavioral difficulties at rates similar to other medically ill groups. No unique behavioral pattern implicating histamine overproduction was identified.

Thirteen children with new-onset inflammatory bowel disease were given a Kiddie-SADS-E interview. Three were depressed at diagnosis. Six mothers had a history of depression based on Adult-SADS-L interviews. The depressed children were less severely ill than the nondepressed children and had not required steroids. However, the depressed children had significantly more life events and their families showed more evidence of conflict than did the nondepressed children.

Approximately 12% of children report recurrent episodes of abdominal pain. In only about 10% of these cases, however, can an organic etiology be identified, and therefore it often is assumed that these children have emotional problems. To test this hypothesis, children with recurrent abdominal pain (RAP) with no identifiable organic cause were compared to children with an organic diagnosis for their abdominal pain, children with psychiatric disorders, and healthy controls. Both groups of children with abdominal pain had significantly more psychiatric disorders (predominantly anxiety and depression) than did the healthy group. Both RAP and psychiatric children had significantly higher Child Behavior Checklist internalizing scores; psychiatric children were rated as significantly more maladjusted on the Children's Global Assessment Scale. Mothers of RAP children were significantly more anxious than mothers of organic pain and healthy children. Psychiatric children were significantly more likely than the other three groups to underreport their psychiatric symptoms relative to their mothers.

The lifetime and current prevalence of depression and anxiety disorders was determined in 41 children with Crohn's disease, 12 children with ulcerative colitis, and 52 children with cystic fibrosis, using the Kiddie-Schedule for Affective Disorders and Schizophrenia interview. The lifetime prevalence of depression was 29% in Crohn's disease, 21% in ulcerative colitis, and 11.5% in cystic fibrosis. The difference in the prevalence of depression between Crohn's disease and cystic fibrosis was significant (p less than 0.05). The lifetime and current prevalence of dysthymia was significantly greater in ulcerative colitis than Crohn's disease (p less than 0.01) or cystic fibrosis (p less than 0.01). The lifetime prevalence of atypical depression was significantly greater in Crohn's disease than cystic fibrosis (22% versus 5.8%, p less than 0.05) and was also greater in ulcerative colitis than cystic fibrosis (21% versus 5.8%, p = 0.1). There was no difference between the groups in the current prevalence of major depression or atypical depression, or in the lifetime or current prevalence of anxiety disorders.