Is it "all in the bag?" Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network.

Objectives: Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy-related medical decision-making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States. Methods: This cross-sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants' perspectives on patients/families' ostomy perceptions, (3) participants' own perspectives on ostomies, and (4) participants' perspectives on multidisciplinary collaboration in ostomy surgery. Results: Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families' perceptions, participants endorsed most (86%) view ostomies as a "failure," various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration. Conclusion: MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy-related psychosocial needs, and ostomy-related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.

The "in between".

When the authors were 12 and 14 years old, their worlds shifted suddenly without warning or consent, and bifurcated our lives into "a before" and "an after." They were both diagnosed with inflammatory bowel disease (IBD) and found themselves in an "in between" space-young but not healthy, sick but not dying, treatments but not cures, intestines swollen and bleeding but appearing fine on the outside, in every sense the definition: an invisible illness. Their own chronic illness experiences helped to shape our pursuit of careers in healthcare, with one of them choosing pediatric IBD psychology (Jennie David) and the other choosing pediatric gastroenterology (Samantha R. Paglinco). Being patients and healthcare professionals (HCPs) created a new "in between" space to occupy and explore. They continue on in these "in between" spaces and choose to bring all of themselves-as patients and HCPs-as theiy work with pediatric IBD patients in their endless pursuit of caring for young people as full, wonderful, complex, flawed, and worthy humans (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.

Introduction: Patient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means-and what successful patient engagement means-are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs. Methods: Several co-authors (Madeleine Huwe, Becky Woolf, Jennie David) are former ImproveCareNow (ICN) PAC members, and we integrate a narrative review of the extant literature and a case study of our lived experiences as former ICN PAC members. We present nuanced themes of successful patient engagement from our lived experiences on ICN's PAC, with illustrative quotes from other PAC members, and then propose themes and metrics to consider in patient engagement across LHNs. Results: Successful patient engagement in our experiences with ICN's PAC reaches beyond the "levels of engagement" previously described in the literature. We posit that our successful patient/PAC engagement experiences with ICN represent key mechanisms that could be applied across LHNs, including (1) personal growth for PAC members, (2) PAC internal engagement/community, (3) PAC engagement and presence within the LHN, (4) local institutional engagement for those who participate in the LHN, and (5) tangible resources/products from PAC members. Conclusion: Patient engagement in LHNs, like ICN, holds significant power to meaningfully shape and co-produce healthcare systems, and engagement is undervalued and conceptualized dichotomously (eg, engaged or not engaged). Reconceptualizing successful patient/PAC engagement is critical in ongoing efforts to study, support, and understand mechanisms of sustainable and successful patient engagement. Having a modern, multidimensional definition for successful patient engagement in LHNs can support efforts to increase underrepresented voices in PACs, measure and track successful multidimensional patient engagement, and study how successful patient engagement may impact outcomes for patients and LHNs.

Variability of Psychosocial Services Within the ImproveCareNow Learning Health System: Opportunities for Optimization.

Care for youth with pediatric inflammatory bowel disease (IBD) is the focus of ImproveCareNow (ICN), an international learning health system devoted to quality care and improved outcomes through collaboration, data sharing, and research. Known to be significantly disruptive to normative social development and quality of life, pediatric IBD significantly increases the risk of internalizing distress and secondary developmental sequelae. While multidisciplinary support including psychosocial care (from social workers and pediatric psychologists) is growing, this evidence-based and beneficial set of services is not universally available to youth with IBD. In a survey sent to the more than 100 established ICN centers, psychosocial providers attempted to identify the coverage and practice scope of psychosocial providers within the network. Results indicated that support varies widely by service type and availability of providers. Recommendations for further research and considerations for centers seeking to expand supports are considered.

Pediatric GI Health Care Professionals' Perceptions of and Engagement With Psychosocial Providers in Pediatric IBD Care.

Multidisciplinary care is recommended for optimal pediatric inflammatory bowel disease (IBD) care, including psychosocial providers (eg, psychologists). However, health care professionals' (HCPs) perceptions of and engagement with psychosocial providers in pediatric IBD is lacking. Methods: Cross-sectional REDCap surveys were completed by HCPs (eg, gastroenterologists) across American ImproveCareNow (ICN) centers. Demographics and self-reported perceptions of and engagement with psychosocial providers were collected. Data were analyzed at participant and site levels through descriptives, frequencies, an independent t test, and exploratory analyses of variance. Results: A total of 101 participants from 52% of ICN sites participated. Participants were 88% gastrointestinal physicians, 49% identifying as female, 94% non-Hispanic, and 76% Caucasian. Of ICN sites, 75% and 94% of sites reported outpatient and inpatient psychosocial care, respectively. Participants referred for various clinical reasons to psychosocial providers (eg, illness adjustment). At the participant level, 92% of HCPs reported psychosocial care was very important and 64% reported their clinical thresholds shifted to engage psychosocial providers earlier in care. Barriers to psychosocial care included limited psychosocial providers (92%), psychosocial providers availability (87%), and IBD patients' lack of openness to psychosocial care (85%). One-way analyses of variance by HCP length of experiences were not statistically significant on perceived understanding of psychosocial providers or perceived changes in clinical threshold over time. Conclusion: HCPs overall reported positive perceptions of and frequent engagement with psychosocial providers in pediatric IBD. Limited psychosocial providers and other notable barriers are discussed. Future work should continue interprofessional education of HCPs and trainees and efforts to improve access to psychosocial care in pediatric IBD.

A Hypothetical Case Example Illustrating the Importance of a Multidisciplinary Approach to Treating Chronic/Functional Abdominal Pain in Pediatric Patients.

Irritable bowel syndrome (IBS) can have a substantial impact on the physical, academic, and psychosocial functioning of pediatric patients. As a functional gastrointestinal disorder, pediatric patients with IBS are thought to benefit from a multidisciplinary approach to target the biopsychosocial factors of this condition. In this co-authored article by a Pediatric Gastroenterologist, Pediatric Pain and Palliative Care specialist and Pediatric GI Psychologist, we present a hypothetical case of a pediatric patient who will undergo evaluation and treatment by each of these specialists demonstrating how a collaborative effort amongst multidisciplinary specialists is the ideal approach to care.

Establishing a Valid, Reliable, and Efficient Chart Review Process for Research in Pediatric Integrated Primary Care Psychology.

Retrospective chart review is an accessible form of research that is commonly used across medical fields but is underutilized in behavioral health. As a relatively newer area of research, the field of pediatric integrated primary care (IPC) would particularly benefit from guidelines for conducting a methodologically sound chart review study. Here, we use our experiences building a chart review procedure for a pediatric IPC research project to offer strategies for optimizing reliability (consistency), validity (accuracy), and efficiency. We aim to provide guidance for conducting a chart review study in the specific setting of pediatric IPC so that researchers can apply this methodology toward generating research in this field.

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.

This article summarizes the literature regarding the adult inflammatory bowel disease medical home, highlights the need for similar models in pediatrics using the Nationwide Children's Hospital program as an example, and outlines next steps to support research and development of the pediatric IBD medical home.

Sustainable generation of patient-led resources in a learning health system.

BACKGROUND: Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and family voices into healthcare. One such PFAC is the Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning health system dedicated to advancing the care of individuals with pediatric inflammatory bowel disease (IBD). Using quality improvement techniques and co-production, the PAC has made great strides in developing novel patient-led resources. METHODS: This paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics. RESULTS: Looking at different iterations of PAC infrastructure, this paper highlights specific leadership approaches used to increase patient involvement and improve resource creation. Emerging data suggests that the larger ICN learning health system has had limited interactions with these resources. CONCLUSION: ICN provides a novel approach for meaningful integration of patient partners into learning health systems. This paper points to the incredible value of PFAC expertise in the resource creation process. Future work should seek to support PFAC development across other diseases and address the challenges of integrating patient-led resources into clinical care.

Unexpected Poor Growth in Pediatric Patients on Food-based Enteral Therapy: Case Series and Suggested Practice Changes.

INTRODUCTION: Enteral feeding pumps at times may deliver different volumes than are prescribed, which can negatively impact growth, nutrition, and well-being. This study sought to assess whether challenges with pump accuracy for patients on food-based formulas contributed to challenges with weight gain. METHODS: Chart review identified complex feeding patients receiving food-based enteral nutrition via feeding pump with unexpected weight loss. Relevant data, such as enteral formula type, and anthropometric information were extracted. RESULTS: Five complex pediatric feeding patients were identified and 2 of these cases were summarized as representative examples, showing weight loss in children following the introduction of enteral food-based formulas because of feeding pump inaccuracy. CONCLUSIONS: Complex pediatric feeding patients may display unexpected and poor weight gain and growth while receiving food-based enteral feeding interventions because of pump errors. It is vital for providers to be aware of these challenges for timely intervention.

Commentary: "How's It Going?" Training Experiences of Pediatric Postdoctoral Fellows During COVID-19.

The COVID-19 pandemic has impacted the lives and workplaces of individuals across the world substantially, in ways that are yet largely unknown. This commentary aims to provide an early snapshot of the experiences of pediatric postdoctoral fellows in academic medical settings; specifically, we will explore the impact of the pandemic on developing mastery within several competencies (e.g., research, professional development, clinical, interdisciplinary). These competencies are critical elements to fellowship to prepare for independent practice. Several models of training competencies for professional psychology and pediatric psychology exist, which focus on trainee skill development. Measures taken to minimize the spread of COVID-19 have directly impacted hospital systems and training, requiring programs to adapt competencies in various domains, such as increased familiarity with telehealth and virtual supervision. Additionally, fellows experienced an impact of the pandemic on securing employment following fellowship, conducting research and program development activities, and on cognitive flexibility and self-care. Governing bodies, such as the APA and Council of Chairs of Training Councils, have released statements and guidelines on addressing training of postdoctoral fellows including increasing flexibility of training methods, limiting in-person contact, and adjusting educational and licensing requirements. This paper offers informed commentary and diverse perspectives from current postdoctoral fellows engaged in a variety of clinical and research responsibilities regarding how the COVID-19 pandemic has impacted their training. We hope this paper will provide important insight into the unique experiences of postdoctoral fellows during the capstone year(s) of training prior to independent work and inform recommendations for postdoctoral training programs.

Use of language in the medical decision-making process for biologic therapy: Youth and parent perspectives.

BACKGROUND: Youth with chronic illnesses and their parents make complex medical decisions and also need to develop medical decision-making skills for transition of care to adult care. The use of inclusive (e.g. 'we decided …') and exclusive (e.g. 'they decided …') language in youth and parents' medical decision-making experiences provides insights into perceptions of engagement. This study assessed youth and parents' perceptions of engagement in medical decision-making about biologic therapy. METHODS: This exploratory mixed-methods secondary analysis of semistructured interview data included youth with juvenile idiopathic arthritis (JIA) and Crohn's disease (CD) and parents. Iterative qualitative coding of interviews generated themes. Exploratory analyses of variance (ANOVAs) and analyses of covariance (ANCOVAs) investigated differences in language use between youth and parents. RESULTS: Parents used more inclusive language in perceptions of medical decision-making experiences than youth, which exploratory analyses found significant (p < 0.05). Youth used more exclusive language than parents in perceptions of medical decision-making. CONCLUSION: This research suggests that youth with chronic illnesses perceived limited engagement in medical decision-making, with parents perceiving higher engagement. This presents challenges for youth as they prepare for the transition to adult care. Future research should assess how inclusive and exclusive language use impacts psychosocial and health outcomes.

The Perceived Ostomy Educational Needs of Pediatric Patients With Inflammatory Bowel Disease and Their Caregivers.

Inflammatory bowel disease (IBD) is a chronic disease causing inflammation of the gastrointestinal tract. Some patients require ostomy surgery to optimize their health. This study assessed perceived medical and psychosocial educational needs related to ostomy surgery in pediatric patients with IBD. This mixed-methods study included qualitative interviews of pediatric patients and caregivers with demographic/medical variables obtained from medical records. Participants (n = 8) had an average age of 15.62 years (standard deviation = 2.97). Mean length of diagnosis was 4.5 years (standard deviation = 3.6 years). Interviews were transcribed and coded. Qualitative coding of narratives identified main codes of Ostomy Surgery, Preoperative Concerns, Postoperative Concerns, Education Preferences, and Social Concerns, with various subcodes. Codes captured unfamiliarity with the ostomies, preferences for education from a medical provider, and psychosocial concerns. Results suggest pediatric patients with IBD have limited understanding of ostomies and limited insight into educational preferences. These findings highlight the importance of developmentally appropriate information for accessible ostomy education.

Adolescent and parent perspectives on medical decision-making for chronic illness.

INTRODUCTION: The objective of the study was to assess correlates of adolescent and parent perceptions of their involvement in medical decision-making (MDM). METHOD: Study participants included 28 pairs of pediatric patients with chronic rheumatologic illnesses and their parents presenting to an outpatient rheumatology clinic. Participants completed measures assessing perceptions of MDM involvement, health consciousness, and decisional conflict. RESULTS: Adolescent health consciousness correlated positively with parent health consciousness and adolescent-valuing involvement. There was a significant positive correlation between adolescents-valuing involvement in medical decisions and perception of actual involvement. Adolescents who perceived themselves as more involved in their care reported less decisional conflict. Parents who wanted to participate in MDM reported greater actual involvement. DISCUSSION: Adolescents who value participation in MDM reported higher levels of actual participation, suggesting their preferences may be considered by providers. Greater engagement in MDM was related to lower decisional conflict for adolescents, suggesting that including adolescents in the MDM process does not necessarily result in confusion or distress. (PsycINFO Database Record