Inflammatory Bowel Disease In Adolescents Research Articles

Considerations in Paediatric and Adolescent Inflammatory Bowel Disease.

The incidence of inflammatory bowel disease [IBD] is rising most rapidly among children and adolescents. Paediatric-onset IBD is associated with a more extensive and severe disease course compared to adult-onset IBD. At a young age, screening for underlying genetic and immunological disorders is important and may impact treatment management. Early and effective treatment is crucial to reach disease remission and prevent complications of ongoing active disease. In children with Crohn's disease, exclusive enteral nutrition is an effective induction therapy. Other promising dietary therapies, such as the Crohn's disease exclusion diet, are emerging. Within paediatric IBD, anti-tumour necrosis factor therapy is the only approved biological thus far and additional treatment options are crucially needed. Other biological therapies, such as vedolizumab and ustekinumab, are currently prescribed off-label in this population. A specific challenge in paediatric IBD is the unacceptable and major delay in approval of drugs for children with IBD. A guided transfer period of paediatric patients to adult care is associated with improved disease outcomes and is required. Major knowledge gaps and challenges within paediatric IBD include the aetiology, diagnostics, and monitoring of disease, tailoring of treatment, and both understanding and coping with the physical and psychological consequences of living with IBD. Challenges and research gaps in paediatrics should be addressed without any delay in comparison with the adult field, in order to ensure a high quality of care for all patients with IBD, irrespective of the age of onset.

Global Burden of Inflammatory Bowel Disease Among Children and Adolescents: A Comprehensive Analysis (1990-2019).

We summarize the global, regional, and national burden of inflammatory bowel disease (IBD) in children and adolescents from 1990 to 2019. Based on the Global Burden of Disease Study 2019, the data of IBD in children and adolescents were analyzed by sex, age, year, and location. Joinpoint analysis was applied to assess the temporal trend of the disease burden. From 1990 to 2019, the incidence of IBD in children and adolescents increased by 22.8%, from 20,897.42 to 25,658.55 cases, especially in high SDI region. During the same period, the DALY numbers decreased by 53.5%, from 243,081.06 to 113,119.86, with all SDI regions experiencing a clear drop in DALYs except high SDI regions. In 2019, early-onset IBD incidence and DALY numbers were reported at 2,053.52 (95% UI: 1,575.62 to 2,677.49) and 73,797.46 (95% UI: 43,655.86 to 105,998.63), respectively. Early-onset IBD in children and adolescents remains a significant global health concern. The disease burden has not improved in developed countries over the past 30 years, highlighting the need for targeted interventions.

Updates In The Management Of Pediatric Inflammatory Bowel Disease

Canada has one of the highest rates of childhoodonset inflammatory bowel disease (IBD) in the world, with the recent Crohn’s and Colitis Canada’s 2023 Impact of Inflammatory Bowel Disease in Canada Report demonstrating that approximately 6,158 children and youth under 18 years are living with IBD, along with 600-650 new diagnoses under age 16 per year. This number is expected to rise to 8,079 by 2035. This represents approximately 10-20% of newly diagnosed patients. Concerningly, although still relatively uncommon compared with adolescent onset IBD, the incidence has increased most significantly in children under 5 years old. Recent health administrative data demonstrated the national incidence of IBD, overall, to be 29.9 per 100,000 (95%CI: 28.3, 31.5) in 2023, with increasing incidence in pediatrics (AAPC:1.27%; 95%CI:0.82, 1.67), despite stable incidence in adults (AAPC:0.26%; 95%CI: -0.42, 0.82). Figure 1 demonstrates that this increase in pediatric incidence is a worldwide phenomenon. Current IBD care in pediatrics is moving toward a precision medicine approach, with unique and standardized approaches to genetics, risk stratification and disease phenotype, nutritional and advanced therapies, and specialized multidisciplinary clinics with knowledge of the unique challenges pediatric patients and their families face with a diagnosis of IBD.

Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study

ObjectiveTo explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. Study designVirtual semi-structured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. ResultsThree themes were generated from the data: 1) a continuum of integration between IBD and personal identity in adolescence and young adulthood, 2) manifestations of the mind-gut connection among AYA with IBD, and 3) hopes and priorities for addressing mental health in IBD care. ConclusionsAYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one’s identity were identified and could be explored in clinical encounters.

Changing epidemiology of inflammatory bowel disease in children and adolescents

BackgroundThe incidence of inflammatory bowel disease (IBD) is rising worldwide, but epidemiological data on children and adolescents are lacking. Understanding the global burden of IBD among children and adolescents is essential for global standardization of methodology and treatment options.MethodsThis is a cross-sectional study based on aggregated data. We estimated the prevalence and incidence of IBD in children and adolescents between 1990 and 2019 according to the Global Burden of Disease Study 2019 (GBD 2019). Age-standardized rates (ASRs) and estimated annual percentage changes (EAPCs) were used to compare the burden and trends between different regions and countries.ResultsIn 2019, there were 25,659 new cases and 88,829 prevalent cases of IBD among children and adolescents globally, representing an increase of 22.8% and 18.5%, respectively, compared to 1990. Over the past 30 years, the incidence and prevalence of IBD among children and adolescents have been highest in high SDI regions, with the most significant increases in East Asia and high-income Asia Pacific. At the age level, incidence and prevalence were significantly higher in the 15–19-year-old age group, while the < 5-year-old group showed the most significant increase in incidence and prevalence.ConclusionThe incidence of IBD in children and adolescents is significantly on the rise in some countries and regions, and IBD will remain an important public health issue with extensive healthcare and economic costs in the future. The reported IBD burden in children and adolescents at the global, regional, and national levels will assist in the development of more precise health policies.

Health Literacy of Children and Adolescents with Inflammatory Bowel Disease (IBD) and Parents of IBD Patients-Coping and Information Needs.

The number of children and adolescents with inflammatory bowel disease (IBD) is increasing. Many chronically ill children and adolescents have low health literacy. Patient empowerment (PE) enables positive changes and control over one's disease through specific activities, information, and counseling. The CEDNA (IBD Needs Assessment) Survey aimed to provide the necessary data to improve PE in pediatric IBD (PIBD). Questionnaires were distributed to adolescent IBD patients and parents of children and adolescents with IBD throughout Germany. The answers were given anonymously. Based on the available data, a subgroup analysis was conducted in relation to the age of the patients and the period since diagnosis. For the parents' responses, the same age groups were analyzed for comparison with the patients' responses. From October 2021 to April 2022, 2810 questionnaires were distributed and 1158 questionnaires were completed (n = 708 parents [61.1%], n = 450 patients [38.9%]). The results indicate that health literacy in children with IBD is low. Significant gaps in knowledge of important IBD topics were identified, and a comparison of responses regarding preferred methods and timing of obtaining information revealed differences between patient and parent preferences. The greatest need for knowledge on IBD topics was found in the group of 16-17-year-old patients on transition (n = 214, 31.8%) and in the group of patients diagnosed 1-2 years ago on the causes of IBD (n = 288, 17.4%). The willingness to seek advice was unexpectedly low. The analysis of all findings according to the patient's age structure and duration since diagnosis can be used to enable age-appropriate communication at certain stages of the disease. This tailored information should increase patients' health literacy, improve their management of the disease, and reduce the burden on their families.

P198 Systematic review to highlight practices and programmes for transition for adolescents with Inflammatory bowel disease

Abstract Background Adolescents with inflammatory bowel disease (IBD) will eventually transition from the family-centric paediatric healthcare team to the adult service. This process happens at an appropriate age or level of development and depends on a number of factors such as transition readiness, disease specific factors, and local policies and practice. This transition period is challenging for patients, families and healthcare providers. The use of structured transition programmes is increasingly incorporated into standards of care, yet the optimal format is not yet fully delineated, and practices vary considerably. The aim of this study was to carry out a systematic review of structured transition programmes and their components to assess impact on disease-specific and transition-related outcomes. Methods A literature review was carried out in four main databases (PubMed, CINAHL, CENTRAL, EMBASE) and relevant publications from the year range 1970-2023 reviewed. Inclusion criteria: reporting on adolescent IBD patients and investigating structured transition programmes/interventions. Exclusion criteria: not reporting outcomes relating to transition readiness/skills or disease related outcomes. Two investigators reviewed the articles, extracted data, and two assessed bias. Results There were 3432 articles identified from initial searches, and 38 included in the final review. Twenty-six studies reported the use of structured transition programmes, and 12 investigated discrete interventions. The key outcomes studies included knowledge, self-efficacy, adherence, clinic attendance and transition readiness. These outcomes consistently improved with the use of structured transition programmes. Those adolescents with IBD transitioning with no structured programme experienced a 3.5-fold increase in IBD related surgical rates, and 2-fold increase in hospital admission rates. Structured transition programmes were shown to significantly improve transition readiness assessment scores. Transitional care programmes consistently improved the following outcomes; relapse/admission rates, corticosteroid use, quality of life, and surgery. The bias assessment showed between-study heterogeneity, low quality of evidence, and high risk of bias. Conclusion Transition outcomes for adolescents with IBD were consistently improved with the use of structured transition programmes. This literature review highlights the considerable variation in delivery of transition care, and the need for optimization of strategies. There is no current standardized model for adolescent IBD patients in Australasia, and this review will guide development of regional IBD transitional care consensus statements.

Global Burden of Inflammatory Bowel Disease Among Adolescents and Young Adults in 204 Countries and Territories, from 1990 to 2021: Results from the Global Burden of Disease Study 2021

Background Inflammatory bowel disease (IBD) is a significant component of the global disease burden, particularly among adolescents and young adults. This study aimed to investigate the patterns and trends of IBD among adolescents from 1990 to 2021. Methods We retrieved data on the incidence and disability-adjusted life years (DALYs) of IBD in adolescents (aged 15-39 years) from the Global Burden of Disease (GBD) 2021 study, Temporal trends of incidence and DALYs were calculated using the average annual percent change (AAPC). The correlation between age-specific incidence rates and DALYs rates with the Sociodemographic Index (SDI) was performed using Spearman’s correlation analysis. Results From 1990 to 2021, age-specific incidence rates significantly increased while age-specific DALYs rates declined [AAPC: 0.22vs-0.16]. All SDI regions saw a decline in age-specific incidence rates while age-specific DALYs rates in adolescent showed an increasing trend in low and middle SDI regions but a-decrease in high, high-middle and low-middle SDI regions. Incidence rates rose from 1990 to 2021 in 21-GBD regions except for high-income North America. In contrast, DALYs rates increased in regions such as Western Sub-Saharan Africa, Central Latin America, Tropical Latin America, Australasia, Eastern Sub-Saharan Africa, Central Sub-Saharan Africa, Central Asia, and North Africa and the Middle East, while they declined in the remaining 21-GBD regions. Among the 204-countries, China exhibited the fastest-growing age-specific incidence rate among adolescents [AAPC: 2.60], followed by Libya (AAPC: 2.59) and Oman (AAPC: 1.56), while Italy showed the fastest decline [AAPC: -0.76] (Figure-1A). Mauritius experienced the fastest growth in age-specific DALYs rates among adolescents (AAPC: 1.93), followed by Libya (AAPC: 1.79) and Mexico (AAPC: 1.45), while Northern Mariana Islands saw the fastest decline (AAPC: -3.28) (Figure-1B). Moreover, the AAPC of age-specific incidence rates for adolescent IBD exhibited a slight decreasing trend with increasing SDI (Figure-1C), and the AAPC of DALYs rates significantly declined with increasing SDI (Figure-1D). Conclusion The regional disparities in the incidence and DALYs rates of adolescent IBD highlight the urgent need for innovative prevention and healthcare strategies to alleviate the global burden of IBD among adolescents. Early screening could be crucial in mitigating the impact of IBD on adolescents.

Factors influencing the healthcare transition in Chinese adolescents with inflammatory bowel disease: a multi-perspective qualitative study

BackgroundThe development and implementation of the transition from pediatric to adult healthcare systems for adolescents with inflammatory bowel disease (IBD) should consider stakeholders’ perceptions. This study aimed to explore the factors influencing the transition of Chinese adolescents with IBD from the perspectives of patients, parents, and healthcare providers.MethodsA descriptive qualitative research was conducted. Purposive sampling was used to recruit 36 participants, including 13 patients, 13 parents, and 10 providers, from a tertiary pediatric IBD center, a tertiary adult IBD center, and the China Crohn’s & Colitis Foundation in Zhejiang Province, China. Individual semi-structured interviews were used to collect data on facilitators and barriers to the transition process. Conventional content analysis was used to analyze the interview transcripts.ResultsNine primary themes were identified. Patients with young age, prolonged disease duration, severe disease, academic pressures such as the Gaokao, low level of disease acceptance, limited transition consciousness, low self-efficacy, poor transition communication, and inadequate medical transition system serve as barriers. While patients with the mentality of guilt towards their parents; parents with low education levels and intensive work schedules, high levels of disease acceptance, and situations of parent-child separation; stakeholders with high transition consciousness, high transition self-efficacy, and effective transition communication act as facilitators. Furthermore, community support and hospital guide services were also contributing factors during the transition.ConclusionsThis study offers comprehensive insights into the factors affecting the transition of Chinese adolescent IBD patients. The process is continuously influenced by stakeholders, community, and healthcare environments and policies. Identifying these factors provides healthcare providers with a reference for developing and implementing targeted transition interventions.

The Link Between Special Diets as Treatment for Adolescent IBD and Eating Disorders

IBD stands for Inflammatory Bowel Disease, an umbrella term for a group of inflammatory conditions that chronically affect the digestive tract (Grigorescu et al., 2023). Previous research has found a link between Inflammatory Bowel Diseases and concurrent diagnoses of eating disorders. The interest and objective of this research study were stimulated by this finding from pre-existing literature: to assess the degree to which special dieting for the treatment of Inflammatory Bowel Disease in adolescents affects the development of an eating disorder. Three methodology tools were employed to assess the prevalence of eating disorders amongst this population: a meta-analysis, a pre-validated quantitative questionnaire, and qualitative interviews. It was concluded that eating disorders aren’t strongly associated with special diets for the treatment of adolescent IBD patients. It was additionally concluded that patients individually choose special dieting as their treatment plan and thus are more resilient to eating behavior changes.

Validation and Reference Scores of the Transition Readiness Assessment Questionnaire in Adolescent and Young Adult IBD Patients.

Transition readiness can predict a successful transition from pediatric to adult care. This study aimed to validate and develop age-dependent reference scores for the (Dutch version of) Transition Readiness Assessment Questionnaire (TRAQ), in adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). TRAQ has 20 items (score 1-5) distributed over 5 domains (total sum score 100) and is completed by AYAs. Following the COnsensus-based Standards for the selection of health Measurement INstruments methodology, we conducted the translation, back-to back translation, pretesting, and validation of the final Dutch version of TRAQ (TRAQ-NL) questionnaire. We used a Rasch model for structural validation, hypothesis testing for construct validity, and Cronbach alpha to demonstrate reliability. Reference scores were calculated using percentiles. Two hundred fifty TRAQ questionnaires were evaluated in 136 AYAs with IBD [56% Crohn disease, 58% male, median age 17.5 years (range 15.7-20.4)]. The overall mean item score was 3.87 (range 1.45-5). With good reliability (Cronbach alpha 0.87), TRAQ-NL discriminated well between knowledge levels, especially in the lower levels. Transition readiness was defined as low, moderate, adequate, or excellent in patients with TRAQ percentile scores (PC) <25th (<3.375 mean item score), 25th-50th (3.375-3.9), 50th-90th (3.91-4.7), or >90th (>4.7). Younger patients, concomitant illness, fewer visits to the transition clinic, and parental dependence were associated with significantly lower TRAQ scores. TRAQ(-NL) is reliable and valid, with age-dependent PC to identify (in)adequate transfer readiness. TRAQ can now be more easily used as a patient-reported outcome measure to monitor transition readiness longitudinally in routine care for AYAs IBD patients.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Executive Summary.

The burden of inflammatory bowel disease (IBD) (i.e., associated direct and indirect costs, prevalence of disease, personal impact to the individual and to caregivers) continues to increase in Canada. The prevalence of IBD has increased since Crohn's and Colitis Canada's 2018 Impact of IBD report from an estimated 270,000 Canadians living with IBD in 2018 to an estimated 322,600 Canadians living with IBD today in 2023. Consequently, associated costs of IBD have also dramatically increased from an estimated $2.57 billion in 2018 to an estimated $5.38 billion in 2023; this increase is due to multiple factors including increased prevalence of disease, inflation, and additional identified factors (e.g., presenteeism, costs of childcare). Beyond the economic impact of IBD, these diseases have a significant impact on people living with the disease and their caregivers, including different presentations of disease, different commonly associated extra-intestinal manifestations or comorbid conditions, and different barriers to accessing care. In this supplementary issue, we review: Evolving trends in the epidemiology of IBD; updated estimates of indirect and direct costs (including out-of-pocket costs) associated with IBD; information specific to IBD in children, adolescents, and seniors; issues related to IBD pertaining to sex and gender; information specific to risks associated with COVID-19 and cancer related to IBD; an overview of current treatments for IBD; and evolving care models, including access to care.

Drug-Related Adverse Events Necessitating Treatment Discontinuation in Pediatric Inflammatory Bowel Disease Patients.

Inflammatory bowel disease (IBD) requires long-term drug therapy in most patients, posing a risk for adverse drug events with the need for discontinuation. In this study, we investigated adverse events (AE) necessitating drug discontinuation in pediatric and adolescent IBD patients. We used data prospectively collected from IBD patients below the age of 18 enrolled in the Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS), namely demographic variables, medical characteristics, drug treatments, and related AE. We analyzed the frequency, type, and risk factors for AE necessitating drug discontinuation. A total of 509 pediatric IBD patients fulfilled the inclusion criteria of which 262 (51.5%) were diagnosed with Crohn disease (CD), 206 (40.5%) with ulcerative colitis (UC), and 41 (8%) with IBD-unclassified (IBD-U). In total, 132 (25.9%) presented with at least 1 drug-related AE that required drug cessation. Immunomodulators [methotrexate 29/120 (24.2%), azathioprine 57/372 (15.3%)] followed by tumor necrosis factor (TNF)-alpha antagonists [adalimumab 8/72 (11.1%), infliximab 22/227 (9.7%)] accounted for the highest proportions of AE necessitating treatment discontinuation. Treatment schemes with at least 3 concomitant drugs significantly amplified the risk for development of drug-related AE [odds ratio = 2.50, 95% confidence interval (1.50-4.17)] in all pediatric IBD patients. Drug-related AE necessitating discontinuation are common in pediatric and adolescent IBD patients. Caution needs to be taken in the case of concomitant drug use.

Current and projected incidence trends of pediatric-onset inflammatory bowel disease in Germany based on the Saxon Pediatric IBD Registry 2000-2014 -a 15-year evaluation of trends.

AimsAn increasing number of children and adolescents worldwide suffer from inflammatory bowel disease (IBD) such as Crohn’s disease (CD) and ulcerative colitis (UC). The present work aims to investigate the incidence, prevalence and future trends of IBD in children and adolescents in Saxony, Germany.MethodsThe Saxon Pediatric IBD Registry collected data on patients up to 15 years of age from all 31 pediatric hospitals and pediatric gastroenterologists in Saxony over a 15-year period (2000–2014). In 2019, an independent survey estimated a registry completeness of 95.7%. Age-standardized incidence rates (ASR) per 100,000 person-years (PY) and prevalence per 100,000 children and adolescents were calculated. Evaluation was also been performed in sex and age subgroups. Joinpoint and Poisson regression were used for trend analyses and projections.Results532 patients with confirmed IBD during 2000–2014 were included in the epidemiological evaluation. 63.5% (n = 338) patients had CD, 33.1% (n = 176) had UC and 3.4% (n = 18) had unclassified IBD (IBD-U). The 15-year IBD prevalence was 111.8 [95%-CI: 102.3–121.3] per 100,000. The incidence ASR of IBD per 100,000 PY over the whole observation period was 7.5 [6.9–8.1]. ASR for the subtypes were 4.8 [4.3–5.3] for CD, 2.5 [2.1–2.9] for UC and 0.3 [0.1–0.4] for IBD-U. The trend analysis of ASR using the joinpoint regression confirmed a significant increase for incidence of IBD as well as CD. For IBD, the ASR per 100,000 PY increased from 4.6 [2.8–6.3] in 2000 to 8.2 [7.5–13.6] in 2014; projected incidence rates for IBD in Germany are 12.9 [6.5–25.5] in the year 2025 and 14.9 [6.7–32.8] in 2030, respectively. Thus, the number of new IBD diagnoses in Germany would more than triple (325%) in 2030 compared to 2000. The increase is expected to be faster in CD than UC, and be more in males than in females. The expected number of newly diagnosed children with IBD in Germany is projected to rise to about 1,584 [1,512–1,655] in 2025, and to about 1,918 [1,807–2,29] in 2030.ConclusionThe incidence of IBD in children and adolescents in Saxony increased at a similar rate as in other developed countries during the observation period. Given this trend, the health care system must provide adequate resources for the care of these young patients in the future.

Risk of venous thromboembolism in children and adolescents with inflammatory bowel disease: A systematic review and meta-analysis.

BACKGROUNDA two- to three-fold increased risk of venous thrombotic events (VTE) has been demonstrated in patients with inflammatory bowel disease (IBD) compared to the general population, but less is known about the risk of VTE in child- and pediatric-onset IBD. In recent years, several studies have reported the rising incidence rate of VTE in juvenile patients with IBD, and the related risk factors have been explored.AIMTo evaluate the risk of VTE in children and adolescents with IBD.METHODSArticles published up to April 2021 were retrieved from PubMed, Embase, Cochrane Library, Web of Science, SinoMed, CNKI, and WANFANG. Data from observational studies and clinical work were extracted. The outcome was the occurrence of VTE according to the type of IBD. The available odds ratio (OR) and the corresponding 95% confidence interval (CI) were extracted to compare the outcomes. Effect size (P), odds ratio (OR), and 95%CI were used to assess the association between VTE risk and IBD disease. Subgroup analyses stratified by subtypes of VTE and IBD were performed. RESULTSTwelve studies (7450272 IBD patients) were included in the meta-analysis. Child and adolescent IBD patients showed increased VTE risk (P = 0.02, 95%CI: 0.01-0.03). Subgroup analyses stratified by IBD (ulcerative colitis (UC): P = 0.05, 95%CI: 0.03-0.06; Crohn’s disease (CD): P = 0.02, 95%CI: 0.00-0.04) and VTE subtypes (portal vein thrombosis: P = 0.04, 95%CI: 0.02-0.06; deep vein thrombosis: P = 0.03, 95%CI: 0.01-0.05; central venous catheter-related thrombosis: P = 0.23, 95%CI: 0.00-0.46; thromboembolic events: P = 0.02, 95%CI: 0.01-0.03) revealed a significant correlation between VTE risk and IBD. Patients with IBD were more susceptible to VTE risk than those without IBD (OR = 2.99, 95%CI: 1.45-6.18). The funnel plot was asymmetric, suggesting the presence of significant publication bias. Pediatric and adolescent IBD patients have an increased VTE risk. UC and CD patients exhibited a high risk of VTE. The risk of VTE subtypes was increased in IBD patients.CONCLUSIONThe current meta-analysis showed that the incidence and risk of VTE are significantly increased in pediatric and adolescent IBD patients. Thus, IBD might be a risk factor for VTE in children and young adults. High-quality prospective cohort studies are necessary to confirm these findings.

Psychosocial burden of inflammatory bowel disease in adolescents and young adults.

This study examined the psychosocial burden of inflammatory bowel disease (IBD) in young people aged 15-25 years attending a tertiary specialist health centre for adolescents and young adults in Brisbane. To describe the impact of IBD on psychosocial well-being in young people and to compare well-being in the IBD cohort to well-being among young people with other chronic conditions, with a view to identifying characteristics and challenges unique to those with IBD. Young people with IBD provided demographic information and psychosocial data through a cross-sectional self-report survey. Psychosocial data included the Kessler Psychological Distress Scale, Perceived Stress Scale, Brief Illness Perception Questionnaire, World Health Organisation Well-being Index, Paediatric Quality of Life Inventory, Short Quality of Life Questionnaire for IBD, Multidimensional Scale of Perceived Social Support, Connor Davidson Resilience Scale 2 and the Multidimensional Health Locus of Control Scale. Surveys were collected from 51 young people with IBD and compared with surveys from 210 young people with juvenile rheumatic disease (n= 31), phenylketonuria (n=21), cystic fibrosis (n=33), renal transplants (n=14) and craniomaxillofacial conditions (n=111). On the psychosocial domains, 41% of young people with IBD had poor well-being and 37% were at risk of depression. When assessed against the comparison group, young people with IBD reported higher depressive symptoms (P=0.04), worse illness perceptions (P < 0.01) and lower internal locus of control (P < 0.01). Early recognition and treatment of depression and other psychosocial comorbidities within integrated pathways of care is crucial in adolescents and young adults with IBD and likely to improve the course of IBD and their overall health and well-being. Interventions aimed at enhancing self-efficacy and increasing public awareness are also likely to be helpful.

The impact of illness intrusiveness and overparenting on depressive symptoms in parents of youth with inflammatory boweldisease.

Inflammatory bowel disease (IBD) management creates significant caregiver demands that can interfere with parents' ability to engage in a number of role functions (i.e., illness intrusiveness) well into their child's adolescence, potentially resulting in excessive or misdirected parenting (i.e., overparenting). Disruptions and limited access to routine and valued activities (e.g., family, work, and leisure) due to IBD and excessive parenting may result in parents neglecting their own personal and emotional self-care needs, increasing their risk for depressive symptoms. To explore these associations, the present study examined parents' experience of illness intrusiveness and subsequent overparenting as serial mediators in the association between disease severity and parent depressive symptoms. Participants were 146 caregivers of adolescents with IBD from an outpatient pediatric gastroenterology clinic. During a scheduled outpatient visit, parents completed measures of illness intrusiveness, overparenting, and depressive symptoms. Pediatric gastroenterologists provided ratings of disease severity. Several direct and indirect associations were observed among the modeled variables. Notably, mediation analysis revealed a significant disease severity → illness intrusiveness → overparenting → depressive symptoms serial indirect effect. Parents' experience of greater IBD-induced lifestyle disruptions is associated with increased overparenting and a heightened risk for depressive symptoms. Parents should be encouraged to establish and maintain a healthy balance between parenting and self-care/role function activities, especially during adolescence when greater youth autonomy and independence are crucial. These types of clinical efforts may reduce the likelihood of parents experiencing depressive symptoms, and have the added benefit of improving adolescent IBD self-management.

The Pediatric Inflammatory Bowel Disease Medical Home: A Proposed Model.

Care for patients with inflammatory bowel disease (IBD) can be complex and costly. Care delivery models to address these challenges and improve care quality are essential. The patient-centered medical home (PCMH), which was developed in the primary care setting, has recently been applied successfully to the adult IBD population. Following the tenets of the PCMH, this specialty medical home (SMH) emphasizes team-based care that is accessible, comprehensive, patient/family-centered, coordinated, compassionate, and continuous and has demonstrated improved patient outcomes. Children and young adults with IBD have equally complex care needs, with additional challenges not faced by the adult population such as growth, physical and psychosocial development, and transition of care from pediatric to adult providers. Thus, we advocate that the components of the PCMH are equally-if not more-important in caring for the pediatric patient population. In this article, we review what is known about the application of the PCMH model in adult IBD care, describe care delivery within the Center for Pediatric and Adolescent IBD at Nationwide Children's Hospital as an example of a pediatric IBD medical home, and propose a research agenda to further the development and dissemination of comprehensive care delivery for children and adolescents with IBD.

Understanding Perceived Stress in Adolescent Inflammatory Bowel Disease.

BackgroundInflammatory bowel disease (IBD) is a chronic and debilitating illness associated with psychosocial comorbidities. Adolescents are vulnerable to the additive stress of managing IBD and navigating developmental milestones. Psychosocial factors, such as catastrophizing, illness stigma, illness uncertainty, and illness-related shame, often contribute to perceived stress in chronic illnesses. However, the combination of these variables on perceived stress in adolescents with IBD has not been examined.MethodsParticipants completed a cross-sectional online self-report survey. Model 4 of PROCESS Macro in SPSS was used to test the parallel mediation model of the relationship between disease severity and perceived stress using catastrophizing, stigma, uncertainty, and shame as mediators using 10,000 bootstrap samples. T-tests were run to assess systematic differences in the dependent variable between subjects.ResultsOne hundred and thirty-one adolescents (Mage = 18.95 years; 100 females) completed the survey. Females had higher stress scores than males (P =0.002), and there were no difference in stress between younger and older participants (P = 0.085), location (P = 0.484), or IBD type (P = 0.515). The total effect of disease stress on perceived stress operating through the mediators was significant, b = 0.168, SE = 0.028, 95% CI [0.112, 0.224]. Helplessness catastrophizing, illness uncertainty, and illness-related shame, but not illness stigma, were equally strong, positive mediators.ConclusionsThe present results suggest that helplessness catastrophizing, illness uncertainty, and illness-related shame are central elements to target in stress interventions for adolescents with IBD.

Rotterdam Transition Test: A Valid Tool for Monitoring Disease Knowledge in Adolescents With Inflammatory Bowel Disease.

Disease knowledge is important in adolescents with inflammatory bowel disease (IBD) transitioning to adult care. We developed an IBD-specific knowledge questionnaire, the Rotterdam Transition Test (RTT), and aimed to validate this tool. This is a prospective longitudinal validation study. The RTT has 25 open questions on IBD, medication, lifestyle, and transition to adult care. A scoring model was developed, and inter-rater agreement was assessed. Using a Rasch model, we determined the difficulty and performance of the questions. Cronbach alpha was used to demonstrate reliability. Patient factors (age, disease, education, medication use, illness acceptance, and independence) were correlated to RTT score. A total of 207 RTTs were evaluated in 111 adolescent IBD patients. The scoring model showed a kappa score of >0.61 for all questions. Reliability with Cronbach alpha was good (0.81). Mean total result of the RTT was 58% (girls) and 55% (boys) of maximal score.The RTT discriminated well between the different levels of knowledge. Knowledge scores increased in patients who did repeated RTTs during the transition period. Male sex, low educational level, disease acceptance issues, and dependence on parents associated with a significantly lower total RTT score. Prednisone use within 3 months and treatment without biologics associated with significantly higher RTT scores. Disease activity was not a significant factor. The RTT is a reliable and valid tool to assess IBD knowledge. The RTT can be used to detect and discuss knowledge gaps in adolescents with IBD transitioning to adult healthcare.