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Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes

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A special issue of Children (ISSN 2227-9067).

Deadline for manuscript submissions: closed (10 August 2022) | Viewed by 20568

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Dr. Anava Wren

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Guest Editor

Department of Pediatrics, Division of Gastroenterology, Hepatology, and Nutrition, Stanford University, Stanford, CA 94305, USA
Interests: pediatric inflammatory bowel disease; pediatric pain management; mindfulness-based interventions for pain and symptom management and cultivation of positive psychological factors

Dr. Michele Maddux

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Guest Editor

1. Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO 64108, USA
2. Department of Pediatrics, University of Missouri Kansas City School of Medicine, Kansas City, MO 64110, USA
Interests: biopsychosocial care in pediatric inflammatory bowel disease; transition from pediatric to adult care models; adherence monitoring and intervention

Special Issue Information

Dear Colleagues,

Inflammatory bowel disease (IBD) is a chronic and relapsing disease affecting a growing number of children in the United States. Crohn’s disease (CD) and ulcerative colitis (UC) are the two most common forms of IBD, both causing chronic inflammation to the gastrointestinal tract. The pathophysiology of IBD is thought to be multifactorial and involve a complex interaction between genetic factors, the immune system, gut microbiota, nutrition, and psychosocial factors.

Research has shown an intimate connection between the brain and the gut. Psychosocial factors are strong predictors of negative health outcomes in pediatric IBD, such as risk of relapse, disease activity, nonadherence, healthcare utilization, and higher healthcare costs. Children with IBD are also at an increased risk of emotional/behavioral challenges and poorer quality of life compared to other youth with chronic health conditions, and these challenges have shown strong links to health outcomes.

An integrated multidisciplinary care model for the treatment of pediatric IBD is increasingly common and deemed essential for optimal care. IBD teams that use a holistic and biopsychosocial approach can enhance a child’s long-term health, psychological wellbeing, and quality of life. Gastroenterologists, surgeons, nurses, dieticians, psychologists, and social workers all play a critical role in the management of pediatric IBD.

This Special Issue, “Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes,” is dedicated to describing the evidence for, and application of, integrated biopsychosocial IBD care. This Special Issue will accept original research and reviews. Examples include, but are not limited to, manuscripts discussing the brain–gut connection and its implications for biopsychosocial care, medical and psychosocial outcomes in the context of integrated multidisciplinary care models, implementation of biopsychosocial interventions within multidisciplinary care, processes to leverage institutional support for integrated multidisciplinary care, and virtual/telemedicine applications of integrated multidisciplinary care.

We look forward to receiving your contributions.

Dr. Anava Wren
Dr. Michele Maddux
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

inflammatory bowel disease
multidisciplinary
pediatric
biopsychosocial
integrated care

Published Papers (11 papers)

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Editorial

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4 pages, 174 KiB

Open AccessEditorial

Integrated Multidisciplinary Treatment for Pediatric Inflammatory Bowel Disease

by Anava A. Wren and Michele H. Maddux

Children 2021, 8(2), 169; https://doi.org/10.3390/children8020169 - 23 Feb 2021

Cited by 8 | Viewed by 2379

Abstract

Inflammatory Bowel Disease (IBD) is a chronic and relapsing inflammatory disorder of the gastrointestinal tract [...] Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

Research

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12 pages, 864 KiB

Open AccessArticle

Impact of Perceived Barriers on Patient Engagement and Attitudes towards Transition and Transfer

by Megan Drovetta, Emily Cramer, Alaina Linafelter, Jordan Sevart and Michele Maddux

Children 2022, 9(9), 1273; https://doi.org/10.3390/children9091273 - 24 Aug 2022

Cited by 1 | Viewed by 1051

Abstract

Objective: This study is a preliminary evaluation of how perceived barriers towards transition might impact patient attitudes towards their own readiness and ability to transition, self-efficacy towards their IBD, and the allocation of treatment responsibility. Methods: A sample of 81 young adults with IBD were seen for standard care in a Young Adult Clinic (YAC). Patients completed questionnaires on perceived transition barriers; perceived confidence, importance, motivation, and readiness towards transition and transfer; IBD self-efficacy; and allocation of treatment responsibility. Path model analyses were conducted. Results: Not knowing how and who to transfer to and not understanding insurance details were the most commonly endorsed perceived barriers to transition. A significant relationship was found between the attitude toward transition and allocation of treatment responsibility, but no meaningful indirect effects were found from perceived barriers to the allocation of treatment responsibility, using attitudes toward transition as an intervening variable. The relationship between perceived barriers and allocation of treatment responsibility was at least partially explained by examining the intervening effects of attitudes toward transfer and self-efficacy. Conclusions: The study findings carry important implications for targets of clinical intervention to assist young adults with IBD in engaging in their health care and ultimately transferring into adult care. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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14 pages, 310 KiB

Open AccessArticle

Hungarian Linguistic, Cross-Cultural, and Age Adaptation of the Patient Satisfaction with Health Care in Inflammatory Bowel Disease Questionnaire (CACHE) and the Medication Adherence Report Scale (MARS)

by Dóra Dohos, Alex Váradi, Nelli Farkas, Adrienn Erős, Andrea Párniczky, Eszter Schäfer, Éva Kosaras, Judit Czelecz, Péter Hegyi and Patrícia Sarlós

Children 2022, 9(8), 1143; https://doi.org/10.3390/children9081143 - 29 Jul 2022

Cited by 1 | Viewed by 1505

Abstract

Background: The TRANS-IBD study examines the superiority of joint transition visits, with drug adherence and patient satisfaction among the outcome measures. Our aim was a cross-cultural, age- and disease-specific adaptation of the ‘Medication Adherence Rating Scale’ (MARS) and ‘Patient satisfaction with health care in inflammatory bowel disease questionnaire’ (CACHE) questionnaires in patients with inflammatory bowel disease (IBD). Methods: Linguistic and cultural adaptation using test and re-test procedures were performed. Internal consistency with Cronbach’s α coefficients, confirmatory factor analyses with root Mean Square Error of Approximation (RMSEA), Comparative Fit Index (CFI), and Tucker-Lewis Index (TLI) were determined. Results: A total of 122 adolescents and 164 adults completed the questionnaires (47.5% male, mean age 17 ± 1; and 29.3% male, mean age 38 ± 11, respectively). In the MARS questionnaire, Cronbach’s α scores were found good in adolescents (0.864) and acceptable in adults (0.790), while in the CACHE questionnaire, scores were rated as excellent in both populations (0.906 and 0.945, respectively). The test-retest reliabilities were satisfactory in both groups (MARS questionnaire: r = 0.814 and r = 0.780, CACHE questionnaire: r = 0.892 and r = 0.898, respectively). RMSEA showed poor fit values in the MARS questionnaire and reasonable fit values in the CAHCE questionnaire, CFI and TLI had statistically acceptable results. Conclusion: Age-and disease-specific Hungarian versions of the questionnaires were developed, which are appropriate tools for TRANS-IBD RCT and daily IBD care. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

10 pages, 916 KiB

Open AccessArticle

Transition of Adolescents with Inflammatory Bowel Disease—Are the Pediatric Teams up to the Task?

by Mette Hald, Katrine Carlsen and Vibeke Wewer

Children 2021, 8(10), 900; https://doi.org/10.3390/children8100900 - 09 Oct 2021

Cited by 2 | Viewed by 1577

Abstract

Our aim was to describe the challenges of the transition process of adolescents with inflammatory bowel disease (IBD), as seen from a pediatric-care perspective, to clarify the key obstacles and propose how to move forward. Semi-structured individual interviews of pediatric gastroenterologists and nurses were analyzed and interpreted according to the principles of social science. It is a challenge for the pediatric team to continuously match, support, and gently guide the ever-changing adolescent patient. All adolescent patients should be offered guidance regardless of their starting point, and specific individual needs should be taken into consideration. Adolescents burdened by psychosocial challenges require extra support. Early and continued interdisciplinary effort is essential. Collaboration with the parents must be continuously adapted to prepare them for their new roles and responsibilities. The shift from the pediatric family-focused approach to the individualistic approach of the Adult Gastroenterology Department signifies a fundamental change. Equipping adolescents with disease-management skills remains a comprehensive task. The following crucial questions remain: Who is capable of performing the transition? Who can dedicate the necessary resources for performing the transition? A transition center led by both pediatricians and adult gastroenterologists in an interdisciplinary setting that includes transition-trained persons may be the solution. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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16 pages, 263 KiB

Open AccessArticle

Online Acceptance and Commitment Therapy and Nutrition Workshop for Parents of Children with Inflammatory Bowel Disease: Feasibility, Acceptability, and Initial Effectiveness

by Sara Ahola Kohut, Inez Martincevic, Sheri L. Turrell, Peter C. Church, Thomas D. Walters, Natalie Weiser and Armanda Iuliano

Children 2021, 8(5), 396; https://doi.org/10.3390/children8050396 - 14 May 2021

Cited by 4 | Viewed by 3162

Abstract

Parents of children with inflammatory bowel disease (IBD) are important members of their healthcare team and influence their child’s adaptation to disease. The primary aim of this research was to test the feasibility and acceptability of a three-session online parent workshop based on acceptance and commitment therapy (ACT) and address concerns about eating well and nutrition in IBD. The secondary aim was to explore the initial effectiveness of this workshop in parent reported psychological flexibility, mindfulness, experiential avoidance, cognitive fusion, valued living, and symptoms of depression, anxiety, and stress. We used a single arm pragmatic prospective study design with parents of children attending the IBD program at a tertiary pediatric healthcare centre in Canada. Mixed methods patient reported outcomes were measured at baseline, immediate post participation, and 3 months post participation in the workshop. Thirty-seven parents enrolled in the study and feasibility and acceptability goals were largely met. Parents qualitatively described changes to their parenting, what aspects of the workshop were most helpful, and targeted feedback on how to improve workshop. Findings suggest that providing parents of children with IBD a brief online ACT workshop including nutrition guidance is feasible and leads to changes in parenting behaviours. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

15 pages, 1874 KiB

Open AccessArticle

Mindfulness-Based Virtual Reality Intervention for Children and Young Adults with Inflammatory Bowel Disease: A Pilot Feasibility and Acceptability Study

by Anava A. Wren, Nicole Neiman, Thomas J. Caruso, Samuel Rodriguez, Katherine Taylor, Martine Madill, Hal Rives and Linda Nguyen

Children 2021, 8(5), 368; https://doi.org/10.3390/children8050368 - 05 May 2021

Cited by 13 | Viewed by 3730

Abstract

The aim of this pilot study was to assess: (1) the feasibility and acceptability of a Mindfulness-Based Virtual Reality (MBVR) intervention among children and young adults with Inflammatory Bowel Disease (IBD), and (2) the preliminary efficacy of MBVR on key psychological (anxiety) and physical (pain) outcomes. Participants were 62 children to young adults with IBD (M = 15.6 years; 69.4% Crohn’s disease; 58% male) recruited from an outpatient pediatric IBD clinic. Participants completed a baseline assessment, underwent the 6-min MBVR intervention, completed a post-intervention assessment and study satisfaction survey, and provided qualitative feedback. Results suggest strong feasibility and acceptability. Participants reported high levels of satisfaction with MBVR including high levels of enjoyment (M = 4.38; range 1–5) and relaxation (M = 4.35; range 1–5). Qualitative data revealed several key themes including participants interest in using MBVR in IBD medical settings (e.g., hospitalizations, IBD procedures, IBD treatments), as well as in their daily lives to support stress and symptom management. Preliminary analyses demonstrated improvements in anxiety (t = 4.79, p = 0.001) and pain (t = 3.72, p < 0.001) following MBVR. These findings provide initial support for the feasibility and acceptability of MBVR among children and young adults with IBD. Results also suggest MBVR may improve key IBD outcomes (e.g., anxiety, pain) and highlight the importance of conducting a randomized controlled trial and more rigorous research to determine intervention efficacy. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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9 pages, 715 KiB

Open AccessArticle

Does Parenting Style Affect Adolescent IBD Transition Readiness and Self-Efficacy Scores?

by Lynsey R. Zuar, Kimberley Chien, Jennifer Lentine, Victoria Cooley, Linda M. Gerber, Mary J. Ward and Laurie Keefer

Children 2021, 8(5), 367; https://doi.org/10.3390/children8050367 - 04 May 2021

Cited by 3 | Viewed by 2348

Abstract

Background: Transition to adult-centered care requires adolescents with inflammatory bowel disease (IBD) to acquire a set of independent self-management skills. Transition success can be affected by maturity, cognitive development, and many other factors. Our hypothesis was that parenting style would be associated with increased self-efficacy and therefore transitions readiness. Methods: A prospective cohort survey study of adolescents with IBD and their parents from October 2018 to October 2019 was performed. Participants completed the IBD-Self-Efficacy Scale- Adolescent questionnaire (IBD-SES-A) and the Transition Readiness Assessment Questionnaire (TRAQ). Parents completed the Parent Styles and Dimensions Questionnaire (PSDQ-short form). Demographic and disease information were also collected. Results: Sixty-nine participants were included for full analysis (36 males and 33 females); mean age was 18.2 years, and average age of IBD diagnosis 13 years. Overall, 83% of participants were non-Hispanic Caucasian, and 84% reported parental annual income over USD 100,000. All 69 parents reported an authoritative parenting style. Females have significantly higher TRAQ scores than males (p = 0.0004). TRAQ scores differed significantly between age groups, with 20 to 22 years old having higher scores (p ≤ 0.0001). TRAQ and IBD-SES-A scores did not differ by parental education or parenting style. Conclusion: Given the inability to delineate different parenting, this study was unable to demonstrate a protective parenting style associated with better transitions readiness and self-efficacy scores in adolescents with IBD. Within the context of authoritative parenting, we did find that females and older adolescents had higher transition readiness scores. Additional research into psychosocial determinants of transition readiness, and the importance of multidisciplinary management with an integrated team including psychologist and social workers, can help improve IBD transition outcomes. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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9 pages, 745 KiB

Open AccessArticle

Evaluating a Standardized Transition of Care Process for Pediatric Inflammatory Bowel Disease Patients

by Jennifer Lynne Shearer, Sharon Perry, Nicole Lidyard, Carolyn Apperson-Hensen, Sarah DeLozier, Kimberly Burkhart, Jeffry Katz and Jonathan Moses

Children 2020, 7(12), 271; https://doi.org/10.3390/children7120271 - 04 Dec 2020

Cited by 2 | Viewed by 1820

Abstract

To reduce lapses in care for pediatric inflammatory bowel disease (IBD) patients approaching adulthood, a health maintenance transition visit (HMV) was developed to supplement standard medical care (SMV). Our aim was to assess the effect of the HMV on transition readiness. A retrospective chart review was conducted at a single center with demographics and clinical data from HMV and SMV visits. Effectiveness of the HMV was assessed by the patient health questionanaire-9 (PHQ-9) and transition readiness assessment questionnaire (TRAQ) scores. A total of 140 patients, 80% Caucasian and 59% male completed an HMV. The mean age was 18 ± 2 years old, and 93% of patients reported inactive or mild disease. Patients who completed at least 1 prior HMV scored significantly higher on the TRAQ when transferring to adult care compared to patients transferred at their first HMV visit (92 vs. 83, p < 0.05). Of patients with no prior depression diagnosis, 36% had a positive screen for depression. A significant relationship was identified between disease status and PHQ-9 (p < 0.05). This study demonstrated a structured HMV increased transition readiness and quantified the significant under-diagnosis of depression in this population, emphasizing the importance of screening. These results indicate depression may affect patients’ transition preparedness. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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Review

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11 pages, 233 KiB

Open AccessReview

Telemedicine and Integrated Multidisciplinary Care for Pediatric IBD Patients: A Review

by Lauren M. Potthoff

Children 2021, 8(5), 347; https://doi.org/10.3390/children8050347 - 28 Apr 2021

Cited by 5 | Viewed by 2017

Abstract

The global COVID-19 pandemic brought with it an unprecedented, widespread implementation of telemedicine services, requiring pediatric inflammatory bowel disease (IBD) providers to shift in-person clinic visits to a virtual platform. With the passing of the one-year anniversary of the global pandemic, telemedicine continues to be offered and utilized. Although it remains unclear as to the extent to which telemedicine services will be used in the future, it is critical to understand how integrated multidisciplinary treatment—the standard of care in pediatric IBD—is delivered through a virtual platform. This paper provides an overview of the existing literature examining integrated multidisciplinary care for pediatric IBD provided via telemedicine. The author also presents one integrated multidisciplinary IBD program’s response to the global pandemic and subsequent transition to telemedicine. Challenges around implementation and directions for future research in this area are also discussed. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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Other

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8 pages, 1552 KiB

Open AccessCommentary

Applying Telemedicine to Multidisciplinary Pediatric Inflammatory Bowel Disease Care

by Hilary K. Michel, Ross M. Maltz, Brendan Boyle, Amy Donegan and Jennifer L. Dotson

Children 2021, 8(5), 315; https://doi.org/10.3390/children8050315 - 21 Apr 2021

Cited by 4 | Viewed by 1845

Abstract

Multidisciplinary care is essential to the delivery of comprehensive, whole-person care for children and adolescents with inflammatory bowel disease (IBD). Team members may include medical, psychosocial, and ancillary providers as well as patient and family advocates. There is significant variability in how this care is delivered from center to center, though prior to the COVID-19 pandemic, most care occurred during in-person visits. At the onset of the pandemic, medical systems world-wide were challenged to continue delivering high quality, comprehensive care, requiring many centers to turn to telemedicine technology. The aim of this manuscript is to describe the process by which we converted our multidisciplinary pediatric and adolescent IBD visits to a telemedicine model by leveraging technology, a multidisciplinary team, and quality improvement (QI) methods. Finally, we put our experience into context by summarizing the literature on telemedicine in IBD care, with a focus on pediatrics and multidisciplinary care. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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10 pages, 794 KiB

Open AccessCommentary

Leveraging Institutional Support to Build an Integrated Multidisciplinary Care Model in Pediatric Inflammatory Bowel Disease

by Jennifer Verrill Schurman and Craig A. Friesen

Children 2021, 8(4), 286; https://doi.org/10.3390/children8040286 - 08 Apr 2021

Cited by 2 | Viewed by 1961

Abstract

While the biopsychosocial nature of inflammatory bowel disease (IBD) is now well accepted by clinicians, the need for integrated multidisciplinary care is not always clear to institutional administrators who serve as decision makers regarding resources provided to clinical programs. In this commentary, we draw on our own experience in building successful integrated care models within a division of pediatric gastroenterology (GI) to highlight key considerations in garnering initial approval, as well as methods to maintain institutional support over time. Specifically, we discuss the importance of making a strong case for the inclusion of a psychologist in pediatric IBD care, justifying an integrated model for delivering care, and addressing finances at the program level. Further, we review the benefit of collecting and reporting program data to support the existing literature and/or theoretical projections, demonstrate outcomes, and build alternative value streams recognized by the institution (e.g., academic, reputation) alongside the value to patients. Ultimately, success in garnering and maintaining institutional support necessitates moving from the theoretical to the practical, while continually framing discussion for a nonclinical/administrative audience. While the process can be time-consuming, ultimately it is worth the effort, enhancing the care experience for both patients and clinicians. Full article

(This article belongs to the Special Issue Integrated Multidisciplinary Care for Pediatric Inflammatory Bowel Disease: Supporting Disease and Psychosocial Outcomes)

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