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.

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

Toward Optimal Decision Making among Vulnerable Patients Referred for Cardiac Surgery: A Qualitative Analysis of Patient and Provider Perspectives.

OBJECTIVES: Comprehension of risks, benefits, and alternative treatment options has been shown to be poor among patients referred for cardiac interventions. Patients' values and preferences are rarely explicitly sought. An increasing proportion of frail and older patients are undergoing complex cardiac surgical procedures with increased risk of both mortality and prolonged institutional care. We sought input from patients and caregivers to determine the optimal approach to decision making in this vulnerable patient population. METHODS: Focus groups were held with both providers and former patients. Three focus groups were convened for Coronary Artery Bypass Graft (CABG), Valve, or CABG +Valve patients ≥ 70 y old (2-y post-op, ≤ 8-wk post-op, complicated post-op course) (n = 15). Three focus groups were convened for Intermediate Medical Care Unit (IMCU) nurses, Intensive Care Unit (ICU) nurses, surgeons, anesthesiologists and cardiac intensivists (n = 20). We used a semi-structured interview format to ask questions surrounding the informed consent process. Transcribed audio data was analyzed to develop consistent and comprehensive themes. RESULTS: We identified 5 main themes that influence the decision making process: educational barriers, educational facilitators, patient autonomy and perceived autonomy, patient and family expectations of care, and decision making advocates. All themes were influenced by time constraints experienced in the current consent process. Patient groups expressed a desire to receive information earlier in their care to allow time to identify personal values and preferences in developing plans for treatment. Both groups strongly supported a formal approach for shared decision making with a decisional coach to provide information and facilitate communication with the care team. CONCLUSIONS: Identifying the barriers and facilitators to patient and caretaker engagement in decision making is a key step in the development of a structured, patient-centered SDM approach. Intervention early in the decision process, the use of individualized decision aids that employ graphic risk presentations, and a dedicated decisional coach were identified by patients and providers as approaches with a high potential for success. The impact of such a formalized shared decision making process in cardiac surgery on decisional quality will need to be formally assessed. Given the trend toward older and frail patients referred for complex cardiac procedures, the need for an effective shared decision making process is compelling.