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Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10-17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis , making sense of change , and navigating sociability . Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues.

Purpose : A growing body of scientific evidence supports the role of food and diet in the pathogenesis and management of inflammatory bowel diseases (IBD). However, little is known about the role of food and diet from the perspectives of pediatric patients and their parents. This study aimed to explore how children and adolescents with IBD and their parents coped with the illness through food and diet in their daily lives. Methods : We conducted semi-structured interviews with 28 children and adolescents with IBD, 26 parents and one grandparent. Results : Two major themes, dietary strategies and family food practices, were identified through thematic analysis. There were three types of dietary strategies: food avoidance and moderation; following a specific diet; and healthy eating. For family food practices, two subthemes were identified: impact on grocery shopping, meal planning, and cooking; and maintaining routine and normality. Conclusions : Our findings have important implications for the clinical care of pediatric IBD. Notably, IBD not only influenced the food practices of the pediatric patients, but also their parents and other family members. Healthcare professionals should consider the family unit when giving nutritional advice or developing nutritional guidelines. Personalized nutritional counselling and ongoing nutritional assessment are also warranted.

Healthcare institutions face widespread challenges of delivering high-quality and cost-effective care, while keeping up with rapid advances in biomedical knowledge and technologies. Moreover, there is increased emphasis on developing personalized or precision medicine targeted to individuals or groups of patients who share a certain biomarker signature. Learning healthcare systems (LHS) have been proposed for integration of research and clinical practice to fill major knowledge gaps, improve care, reduce healthcare costs, and provide precision care. To date, much discussion in this context has focused on the potential of human genomic data, and not yet on human microbiome data. Rapid advances in human microbiome research suggest that profiling of, and interventions on, the human microbiome can provide substantial opportunity for improved diagnosis, therapeutics, risk management, and risk stratification. In this study, we discuss a potential role for microbiome science in LHSs. We first review the key elements of LHSs, and discuss possibilities of Big Data and patient engagement. We then consider potentials and challenges of integrating human microbiome research into clinical practice as part of an LHS. With rapid growth in human microbiome research, patient-specific microbial data will begin to contribute in important ways to precision medicine. Hence, we discuss how patient-specific microbial data can help guide therapeutic decisions and identify novel effective approaches for precision care of inflammatory bowel disease. To the best of our knowledge, this expert analysis makes an original contribution with new insights poised at the emerging intersection of LHSs, microbiome science, and postgenomics medicine.

Rationale: Living with a chronic illness poses many challenges, especially during the adolescent stage of development. Few studies have explored young people's experiences of talking about their illness and how they go about deciding if and when they should tell others about their condition., Objective: Our study sought the perspectives of Canadian children and adolescents living with inflammatory bowel disease (IBD) to determine how they go about deciding if and when to tell others about their illness., Methods: Twenty-five participants with IBD, ranging in age from 10 to 17 years old, were interviewed about their experiences., Results: Our participants highlighted that they generally preferred to conceal their illness. However, when they did disclose, they drew on a diverse range of contextual factors such as their knowledge of the illness as well as the severity of their illness, to make the decision. They also highlighted that one of the main challenges they experience is dealing with negative reactions to the news of their illness. This paper presents a decision-making model describing how children decide whether to disclose or conceal their IBD., Conclusion: Our study illustrates that for children and adolescents, managing others' knowledge about their illness has important implications for illness identity management. We argue that knowledge of how children with IBD make disclosure decisions is an important part of understanding the social experience of having IBD, and in creating environments that allow them to adapt to life with IBD. Our study clearly highlights the need for specific programs to be implemented to normalize IBD and to create supportive environments for children and adolescents diagnosed with IBD., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Background: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. Methods: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. Results: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. Conclusions: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process. [ABSTRACT FROM AUTHOR]