• Caregivers
• Health-related quality of life
• Inflammatory bowel disease
• PROMIS
• Parents
• Patient reported outcomes
• Pediatric Crohn’s disease

• Humans
• Female
• Male
• Crohn Disease/psychology
• Crohn Disease/therapy
• Adolescent
• Patient Reported Outcome Measures
• Cross-Sectional Studies
• Child
• Quality of Life/psychology
• Parents/psychology
• Surveys and Questionnaires
• Perception

• anxiety
• gut–brain axis
• inflammatory bowel disease
• intestinal microbiota
• stress

• anti TNF drugs
• artificial intelligence
• crohn's disease
• social media
• stuffthatworks

• Humans
• Female
• Male
• Crohn Disease/diagnosis
• Crohn Disease/drug therapy
• Self Report
• Bayes Theorem
• Cross-Sectional Studies
• Crowdsourcing
• Tumor Necrosis Factor Inhibitors/therapeutic use
• Tumor Necrosis Factor-alpha
• Infliximab/therapeutic use
• Treatment Outcome
• Internet

• Health care maintenance
• Immunization
• Malignancy
• Pediatric inflammatory bowel disease
• Preventative care
• Screening

• Adolescents
• Inflammatory bowel disease
• Mental health
• Parents
• Quality of life

• Ministry of Health, Labour and Welfare

• Crohn's disease
• IBD
• family members
• quality of life
• systematic review
• ulcerative colitis

• distress
• inflammatory bowel diseases
• parents
• pediatrics
• post-traumatic stress disorder

• inflammatory bowel disease
• parenting stress

Living with a non-acute (phenylketonuria) or acute (e.g. urea cycle disorders, organic acidurias) intoxication-type inborn error of metabolism (IT-IEM) can have a substantial impact on health-related quality of life (HrQoL) of paediatric patients and their families. Parents take primary responsibility for treatment monitoring and experience worry and fear about their child's health status. Quantitative evidence on parental psychological factors which may influence the HrQoL of patients with IT-IEM are sparse to non-existent.

In this multicenter survey study 50 parents of IT-IEM patients (ages 5–19) assessed the severity of their child's disease, reported on caregiver burden, and proxy-rated their child's HrQoL. Additionally, 35 patient self-reports on HrQoL were obtained (n = 16 female patients, n = 19 male patients). Multiple linear regressions were conducted to examine the predictive power of child age, sex, medical diagnosis type (acute / non-acute), parental perceived disease severity and caregiver burden on patients' HrQoL. Mediation analyses were used to investigate the relation of caregiver burden and parental ratings of disease severity with patients' HrQoL.

Significant regression models for self-reported [F(5,34) = 10.752, p < .001, R² adj.^. = 0.59] and parent proxy reported HrQoL [F(5,49) = 20.513, p < .001, R² adj.^. = 0.67] emerged. High caregiver burden and perceived disease severity predicted significantly lower patient self- and proxy-reported HrQoL while type of diagnosis (acute versus non-acute) did not. Female sex predicted significantly lower self-reported HrQoL. High caregiver burden was the mediating factor between high perceived severity of the child's disease and lower proxy- by parent rated HrQoL.

Detecting elevated burden of care and providing support for parents seems crucial to prevent adverse consequences for their children's HrQoL. Intervention studies are needed, to assess which support programs are most efficient.

•

Caregiver burden enforced by high parent-perceived disease severity is a considerable risk factor for low HrQoL in paediatric patients with IT-IEM.

• overparenting
• pediatric inflammatory bowel disease
• psychosocial functioning

• Child
• Family
• Humans
• Inflammatory Bowel Diseases/diagnosis
• Parents
• Qualitative Research
• Quality of Life

• adolescents
• inflammatory bowel disease
• parents
• quality of life
• resilience

• Health-related quality of life
• Pediatric Crohn's disease
• Pediatric inflammatory bowel disease
• Psychological distress
• Psychosocial functioning

• Crohn Disease/psychology
• Female
• Humans
• Inflammatory Bowel Diseases/psychology
• Male
• Quality of Life/psychology

• Cultural adaptation
• pediatric inventory for parents
• psychometric study

• Blood test
• Child
• Colonoscopy
• Diagnostic imaging
• Disease progression
• Feces
• Inflammatory bowel disease
• Investigative techniques
• Parent
• Perception

• Freemasons Paediatric Postgraduate Scholarship in Paediatric and Child Health.

Although the impact of pediatric inflammatory bowel disease (IBD) extends beyond the patient to their parents and families, the focus of previous literature has largely been on investigating the patient’s medical and psychosocial functioning, with less consideration of the family system. Having a comprehensive understanding of parent and family functioning within the context of pediatric IBD is important given the role parents and family members have in the successful management of the disease and caring of the child. The current review paper aggregates the empirical research regarding parent and family functioning, including comparisons to normative samples, other illness groups, and how functioning relates to child psychosocial and health outcomes. Extant literature on parents and families in pediatric IBD has largely focused on the variables of parenting stress, parent psychosocial functioning, parent quality of life, and family functioning. Summary findings elucidate the complex relationships between parents, families, and children affected by IBD and highlight the importance of assessing parent and family functioning within pediatric IBD. The current review also offers implications for clinical practice, notes the limitations of the present literature, and provides recommendations for future research.

• family
• gastroenterology
• inflammatory bowel disease
• parent
• pediatric
• psychogastroenterology

Statistics indicate that the incidence of Crohn’s disease (CD) is rising in many countries. The poor understanding on the pathological mechanism has limited the development of effective therapy against this disease. Previous studies showed that long noncoding RNAs (lncRNAs) could be involved in autoimmune diseases including CD, but the detailed molecular mechanisms remain unclear.

To identify the differentially expressed lncRNAs in the intestinal mucosa associated with CD, and to characterize their pathogenic role(s) and related mechanisms.

The differential expression of lncRNAs was screened by high-throughput RNA sequencing, and the top candidate genes were validated in an expanded cohort by real-time PCR. The regulatory network was predicted by bioinformatic software and competitive endogenous RNA analysis, and was characterized in Caco-2 and HT-29 cell culture using methods of cell transfection, real-time PCR, Western blotting analysis, flow cytometry, and cell migration and invasion assays. Finally, these findings were confirmed in vivo using a CD animal model.

The 3' end of lncRNACNN3-206 and the 3’ UTR of Caspase10 contain high-affinity miR212 binding sites. lncRNACNN3-206 expression was found to be significantly increased in intestinal lesions of CD patients. Activation of the lncRNACNN3-206-miR-212-Caspase10 regulatory network led to increased apoptosis, migration and invasion in intestinal epithelial cells. Knockdown of lncRNACNN3-206 expression alleviated intestinal mucosal inflammation and tissue damage in the CD mouse model.

lncRNACNN3-206 may play a key role in CD pathogenesis. lncRNACNN3-206 could be a therapeutic target for CD treatment.

• Crohn’s disease
• Microarray
• lncRNACNN3-206
• Gene regulation
• Cell migration and invasion
• miR-212

• 3' Untranslated Regions/genetics
• Adolescent
• Adult
• Animals
• Apoptosis/genetics
• Caco-2 Cells
• Caspase 10/genetics
• Cell Movement/genetics
• Crohn Disease/chemically induced
• Crohn Disease/genetics
• Crohn Disease/pathology
• Disease Models, Animal
• Epithelial Cells/pathology
• Female
• Gene Expression Profiling
• Gene Knockdown Techniques
• HT29 Cells
• Humans
• Intestinal Mucosa/drug effects
• Intestinal Mucosa/pathology
• Male
• Mice
• MicroRNAs/metabolism
• Middle Aged
• RNA, Long Noncoding/genetics
• RNA, Long Noncoding/metabolism
• RNA, Small Interfering/metabolism
• Tissue Array Analysis
• Trinitrobenzenesulfonic Acid/toxicity
• Young Adult

• Anxiety
• Depression
• Health-related quality of life
• Inflammatory bowel disease
• Youth

• Adaptation, Psychological
• Adolescent
• Anxiety/psychology
• Child
• Colitis, Ulcerative/psychology
• Crohn Disease/psychology
• Depression/psychology
• Female
• Humans
• Inflammatory Bowel Diseases/psychology
• Male
• Perception
• Prospective Studies
• Quality of Life/psychology
• Regression Analysis
• Surveys and Questionnaires
• Young Adult

• 985 Stichting Vrienden van het Sophia
• 14.307.04 Stichting Crohn en Colitis Ulcerosa Fonds Nederland
• 1303-012 Fonds NutsOhra
• 2013201 Stichting Theia

• Burden of disease
• Crohn’s disease
• Epidemiology
• Global health
• Inflammatory bowel disease
• Ulcerative colitis

Canada has among the highest rates of IBD in the world, and the number of people living with these disorders is growing rapidly. This has placed a high burden on the health care system and on the Canadian economy—a burden that is only expected to grow in the future. It is important to understand IBD and its impact on Canadian society in order to appropriately plan for health care expenditures, reduce the burden on patients and their families, and improve the quality of life for those afflicted with IBD. In Canada, there is a lack of public awareness of the impact of Crohn’s disease and ulcerative colitis. Raising awareness is crucial to reducing the social stigma that is common with these diseases and to help individuals maximize their overall quality of life. A better public understanding of IBD can also help to raise and direct funds for research, which could lead to improved treatments and, ultimately, to a cure. This report from Canadian clinicians and researchers to Crohn’s and Colitis Canada makes recommendations aimed at the public, policy-makers, scientific funding agencies, charitable foundations and patients regarding future directions for advocacy efforts and areas to emphasize for research spending. The report also identifies gaps in knowledge in the fields of clinical, health systems and epidemiological research.

• Costs
• Crohn’s disease
• Inflammatory bowel disease
• Prevalence
• Quality of life
• Ulcerative colitis

Inflammatory bowel disease (IBD) has a substantial impact on quality of life. It causes considerable personal, emotional and social burdens. The impact of IBD on quality of life cannot readily be quantified as a cost; however, the impact places a significant burden on the patient and caregivers. Numerous studies have shown that health-related quality of life is impaired in patients living with IBD as compared with the general population. While disease activity and severity is an important driver of physical and mental health–related quality of life, patients may experience psychological distress even during clinical remission. Reduced quality of life can impact persons living with IBD as they pursue employment, family planning and personal milestones. Further, the impact of IBD extends to the patient influencing the quality of lives of those around them, including their caregivers. Improving quality of life requires a multidisciplinary approach that includes screening for and managing psychological distress. Adaptive coping mechanisms help manage illness perceptions and reduce psychosocial distress.

• Crohn's disease
• Epidemiology
• Inflammatory bowel disease
• Quality of life
• Ulcerative colitis

Canada has among the highest rates of childhood-onset IBD in the world. Over 7000 children and youth under 18 years old are living with IBD in Canada, and 600 to 650 children under 16 years old are diagnosed annually. While the peak age of onset of IBD is highest in the second and third decades of life, over the past two decades incidence has risen most rapidly in children under 5 years old. The treatment of children with IBD presents important challenges including therapeutic choices, risk of adverse events to medications, psychosocial impact on the child and family, increased cost of health care and the implications of the transition from pediatric to adult care. Despite the unique circumstances faced by children and their families, there is a lack of research to help understand the causes of the rising incidence and the best therapies for children with IBD. Scientific evidence—and specifically clinical trials of pharmaceuticals—are too often extrapolated from adult research. Health care providers must strive to understand the unique impact of childhood-onset IBD on patients and families, while researchers must expand work to address the important needs of this growing patient population.

• Costs
• Crohn’s disease
• Epidemiology
• Health services research
• Incidence
• Inflammatory bowel disease
• Pediatrics
• Prevalence
• Ulcerative colitis

• health status
• primary immunodeficiency
• transition to adulthood

Although the incidence of Crohn’s disease (CD) in China is not as high as that in European and American countries, there has been a clear increasing trend in recent years. Little is known about its pathogenesis, cause of deferment, and the range of complications associated with the disease. Local and international scholars have presented many hypotheses about CD pathogenesis based on experimental and clinical studies, including genetic susceptibility, immune function defects, intestinal microflora disorders, delayed hypersensitivity, and food antigen stimulation. However, the specific mechanism leading to this immune imbalance, which causes persistent intestinal mucosal damage, and the source of the inflammatory cascade reaction are still unclear. So far, the results of research studies differ locally and internationally. This paper presents the most current research on immune factors in the pathogenesis of CD.

• Pathogenesis
• Immune
• Immunotherapy
• Intestinal inflammation
• Crohn’s disease
• Cytokines
• Lymphocytes
• T lymphocytes

• Animals
• Crohn Disease/diagnosis
• Crohn Disease/immunology
• Crohn Disease/metabolism
• Crohn Disease/therapy
• Humans
• Immunity, Cellular
• Immunity, Mucosal
• Immunotherapy/methods
• Inflammation Mediators/immunology
• Inflammation Mediators/metabolism
• Intestinal Mucosa/immunology
• Intestinal Mucosa/metabolism
• Lymphocyte Subsets/immunology
• Lymphocyte Subsets/metabolism
• Signal Transduction

• Chronic disease
• Complementary and alternative therapy
• IBD
• Perspective
• Shared decision-making

• Adaptation, Psychological
• Adult
• Attitude
• Canada
• Caregivers/psychology
• Child
• Chronic Disease
• Complementary Therapies/methods
• Decision Making
• Female
• Humans
• Inflammatory Bowel Diseases/diagnosis
• Inflammatory Bowel Diseases/therapy
• Male
• Parent-Child Relations
• Prognosis
• Qualitative Research
• Risk Assessment

• Age of Onset
• Anti-Bacterial Agents/therapeutic use
• Biomarkers/blood
• Child
• Endoscopy, Gastrointestinal/methods
• Evidence-Based Medicine
• Gastrointestinal Agents/therapeutic use
• Genetic Predisposition to Disease
• Humans
• Immunosuppressive Agents/therapeutic use
• Inflammatory Bowel Diseases/diagnosis
• Inflammatory Bowel Diseases/drug therapy
• Inflammatory Bowel Diseases/physiopathology

• UL1 TR001425 NCATS NIH HHS

Identifying intestinal microbiota is arguably an important task that is performed to determine the pathogenesis of inflammatory bowel diseases (IBD); thus, it is crucial to collect and analyze intestinally-associated microbiota. Analyzing a single niche to categorize individuals does not enable researchers to comprehensively study the spatial variations of the microbiota. Therefore, characterizing the spatial community structures of the inflammatory bowel disease microbiome is critical for advancing our understanding of the inflammatory landscape of IBD. However, at present there is no universally accepted consensus regarding the use of specific sampling strategies in different biogeographic locations. In this review, we discuss the spatial distribution when screening sample collections in IBD microbiota research. Here, we propose a novel model, a three-dimensional spatial community structure, which encompasses the x-, y-, and z-axis distributions; it can be used in some sampling sites, such as feces, colonoscopic biopsy, the mucus gel layer, and oral cavity. On the basis of this spatial model, this article also summarizes various sampling and processing strategies prior to and after DNA extraction and recommends guidelines for practical application in future research.

• IBD microbiota research
• colonoscopic biopsy
• community structure
• feces
• mucus gel layer
• oral cavity
• sampling strategies

• Crohn's disease
• Genetic
• HLA