Laura M. Mackner

Long-Term Psychosocial Outcomes Reported by Children and Adolescents with Inflammatory Bowel Disease

OBJECTIVES: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.METHODS: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 Crohns Disease Activity Index during a clinic visit within a week of completion of the questionnaires.RESULTS: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.CONCLUSIONS: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.

Oral medication adherence in pediatric inflammatory bowel disease

&NA; The purpose of this study was to examine reports of adherence to oral medications, parent‐child concordance in reports of adherence, and factors associated with poor adherence in adolescents with inflammatory bowel disease (IBD). Participants were 50 children with IBD 11 to 17 years of age and their parents. Parents completed an adherence interview and the Child Behavior Checklist, Family Assessment Device, and demographics questionnaires. Separately, adolescents completed the adherence interview and the Piers Harris Self‐Concept Scale, Childrens Depression Inventory, and Coping Strategies Inventory questionnaires. The treating gastroenterologists of participating children completed the Pediatric Crohns Disease Activity Index during a clinic visit within a week of completion of the questionnaires. Mean parent‐ and child‐reported adherence scores fell between the “most of the time” and “always” categories, although perfect adherence was low. Among IBD‐specific medications (5‐ASAs, immunomodulators, steroids), 48% of children and 38% of parents reported being always adherent to all medications. Parent‐child concordance was high. Family dysfunction and poor child coping strategies were associated with worse adherence. The correlation between more behavioral/emotional problems and lower adherence approached significance. Adherence should be monitored in families that lack appropriate child discipline and in children who cope by simply wishing stressors would go away. Because these issues are associated with poor adherence, it has been suggested that psychotherapy addressing these areas may contribute to improved adherence.

Psychosocial functioning in pediatric inflammatory bowel disease.

Background: 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. Methods: A literature search was conducted using the MEDLINE and PsychInfo computerized databases and bibliographies of relevant articles. Results: Compared with healthy children, children with IBD are at greater risk of difficulties ibehavioral/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. Conclusions: 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.

Psychosocial Issues in Pediatric Inflammatory Bowel Disease: Report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

ABSTRACT Pediatric inflammatory bowel disease (IBD) can affect many areas of psychosocial functioning, and comprehensive medical care includes consideration of psychosocial issues as well as disease factors. The purpose of this clinical report is to review research on psychosocial functioning in pediatric IBD and to provide recommendations for care providers in the areas of psychopathology, health-related quality of life, and social, family, and school functioning. Youth with IBD are at increased risk for difficulty in all areas reviewed, and many psychosocial factors are associated with disease activity, which highlights the importance of monitoring psychosocial functioning as part of clinical care. Several interventions have empirical support or show promise for addressing psychosocial difficulty, and recommendations for monitoring and treating these issues are provided.

Dietary recommendations to prevent and manage chronic pediatric health conditions : Adherence, intervention, and future directions

This review provides a summary of the dietary aspects of pediatric health conditions. Within each condition, dietary recommendations are reviewed, and adherence rates, factors affecting adherence, and known interventions are reported. Findings indicate that knowledge is necessary but not sufficient for dietary change. Interventions specifically targeting diet appear more promising than interventions aimed at global treatment adherence. Behavioral interventions and group treatment modalities also appear promising. Recommendations for future research include a systematic assessment of barriers to dietary adherence across populations, integration of the research on normative development of eating behavior in childhood, and the application of this information to the design and implementation of future treatment.

Psychological factors affecting pediatric inflammatory bowel disease

Purpose of review Psychological factors affecting pediatric inflammatory bowel disease, intervention and other therapeutic resources are reviewed. Recent findings 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. Summary 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.

Treatment Regimen Adherence in Pediatric Gastroenterology

Objective: To review and critically evaluate the extant research pertaining to adherence in pediatric gastroenterological diseases, particularly inflammatory bowel disease and celiac disease, and to provide recommendations for future research development. Materials and Methods: A literature search with no date restriction was conducted using PubMed and PsychInfo electronic databases and bibliographies of relevant articles. Results: Adherence rates in inflammatory bowel disease and celiac disease range considerably from 16% to 62% and 5% to 70%, respectively, across treatments and assessment method; nonadherence frequency was generally not reported. Measures used to assess adherence included self-report, interview, diet record, and bioassay methods, and each measure demonstrated strengths and limitations. Limited evidence suggests that adherence in both disease populations is related to patient and family behavioral factors and that nonadherence is related to poor disease outcome. Treatment outcome research for nonadherence is scant in the current literature. Conclusions: Future research should focus on refining assessment method, examining adherence and concomitant behavioral factors longitudinally, testing theoretical models of adherence, and developing efficacious treatments for nonadherence.

Academic achievement, attendance, and school-related quality of life in pediatric inflammatory bowel disease.

Objective: Inflammatory bowel disease (IBD) and its treatment have the potential to disrupt school functioning. Some research suggests that youth with IBD may have increased absences, but little is known about other areas of school functioning or related factors. This study examined school functioning (absences, achievement, grade retention, special education, and school-related quality of life) in adolescents with IBD compared with healthy adolescents and investigated demographic, disease, and psychosocial variables as predictors. Methods: Participants were 92 adolescents 11 to 17 years (50 with IBD and 42 healthy) and parents who completed questionnaires assessing psychosocial and school functioning. Report cards and school absence information were obtained from schools. Results: Youth with IBD had poorer school functioning in all areas, although only absences were significantly different between groups. Among those with IBD, internalizing problems predicted absences, income and externalizing problems predicted grade point average, and parent marital status and somatic complaints predicted school quality of life. Disease factors, including but not limited disease activity, were not significant predictors. Conclusions: Adolescents with IBD are at risk for school difficulty, and demographic and psychosocial factors are better predictors than disease factors. Interventions aimed at improving behavioral/emotional problems may improve school functioning.

Self-Management in Pediatric Inflammatory Bowel Disease: A Clinical Report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

This clinical report aims to review key self-management and adherence issues in pediatric inflammatory bowel disease (IBD) and to provide recommendations for health care providers regarding evidence-based assessment and treatment approaches to promote optimal self-management. Self-management difficulties in the form of nonadherence to treatment regimens are common in pediatric IBD and are influenced by various disease-related, individual, family, and health professional relationship factors. To promote adaptive self-management, health care providers are encouraged to adopt a long-term preventive orientation, which includes routine screening of barriers to self-management and nonadherence in the context of routine clinic appointments. The use of a multimethod approach to assessment that incorporates objective measures (eg, pill counts or bioassays) may be particularly advantageous. Individualized treatment approaches that incorporate evidence-based practices, such as providing written treatment plans and offering opportunities to practice and receive feedback on skills, may help to ameliorate minor self-management concerns; however, more severe or chronic self-management problems may require a referral for behavioral health intervention. Additional research to broaden our understanding of self-management in domains beyond medication adherence and to evaluate the effect of clinic-based interventions is imperative.

Psychoneuroimmunologic factors in inflammatory bowel disease

Background: Bidirectional relationships between the immune system, nervous system, and psychological processes likely exist in inflammatory bowel disease (IBD) because stress can affect IBD, and IBD is associated with an increased risk of psychological difficulty. The field of psychoneuroimmunology (PNI) sheds light on specific mechanisms that are involved in these relationships, and this research can be applied specifically to IBD. The purpose of this article is to review research on PNI processes in IBD and provide recommendations for future research. Methods: A literature search was conducted using the PubMed and PsychInfo computerized databases and bibliographies of relevant articles. Results: The hypothalamic–pituitary–adrenal axis, sympathetic‐adrenomedullary system, proinflammatory cytokines, substance P, and mast cells play roles in inflammatory processes in IBD. These processes also respond to stress, and they have been implicated in psychological problems in otherwise healthy individuals. These overlapping processes in inflammation and psychological function have received limited attention in IBD, but preliminary evidence suggests that these mechanisms may play a role in the psychological difficulty experienced by those with IBD. Conclusions: Several bidirectional PNI mechanisms overlap in IBD, suggesting ways that stress and psychological function can affect disease activity and, conversely, avenues by which the inflammation in IBD may contribute to psychological difficulty. More research on specific PNI processes is needed to fully understand these factors in IBD. (Inflamm Bowel Dis 2011;)