Objective This study aims to describe the experience of implementing a psychosocial distress screening system for children with serious or chronic medical conditions.Methods Achieving RoutIne Screening for Emotional health (ARISE) was developed to systematically evaluate psychosocial distress in children with serious medical or chronic medical illnesses, by integrating patient-reported outcome measures (PROM) into care delivery. ARISE was developed using a user-centered approach with extensive input from patients, families, and healthcare professionals to overcome barriers to routine PROM collection and integration into care as usual. It comprises a system to capture PROMs and then relay results to clinicians for changing care. We sought to implement ARISE at four subspecialty pediatric clinics caring for patients with cystic fibrosis, sickle cell disease, hemophilia, and neurological malignancy.Results Problems with acceptability, appropriateness, and feasibility represented barriers to implementation which were overcome by modifying the intervention using stakeholder input during the planning phase, leading to broad program acceptance. ARISE was implemented in three of the four clinics, in which 79.8% of eligible children and their family completed PROMs.Conclusion The ARISE program demonstrated the feasibility and effectiveness of integrating psychosocial screenings into subspecialty pediatric clinics, thereby enhancing the identification and management of psychosocial issues in children with serious and chronic medical illnesses.

Outcomes1. Participants will self-report the ability to summarize elements of CMC family caregivers’ four “unseen” experiences and justify the need for innovative methods to capture them.2. Participants will self-report the ability to describe the four qualitative methods capturing parent experiences presented in this talk and justify the importance of partnering with parents as members of the research team.Key MessageClinicians lack insight into the lived experiences of family caregivers of children with medical complexity. Integrating parent partners into the research team can illuminate family caregivers’ “unseen” experiences to both improve clinician-parent rapport and better inform family caregiver support interventions.AbstractClinicians do not witness outside-the-hospital experiences of family caregivers of children with medical complexity (CMC). Parents’ “unseen” experiences include: (1) the gradual process of becoming CMC caregivers, (2) providing direct medical and care needs (e.g., the work of care), (3) attempting to find rest and rejuvenation while caregiving, and (4) grieving the death of a child. Parents are therefore necessary partners in helping clinicians better understand these experiences. By partnering with parents as members of the study team, researchers can more effectively illuminate caregivers’ “unseen” experiences with the dual aim of improving clinician-parent rapport and informing parent support interventions. Further, integrating parent partners into the research team generates research focused on the issues that matter most to those directly affected and empowers parents to contribute to the science of caregiver support.In this talk, we share our perspectives and experiences as clinician-scientists, one a bereaved parent of a child with medical complexity. We first summarize the four “unseen” parent experiences laid out above. We then explain why innovative methodologies are needed to capture them and describe four qualitative methods we have used for representing such experiences: (1) photo elicitation, (2) ethnography and participant observation, (3) integration of bereaved parents into research planning and conduct, (4) experience-based co-design for development of interventions. Finally, we assert that prioritizing methods that elevate the “unseen” is an important challenge for pediatric palliative care research.KeywordsScientific Research / Communication

Background: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions. Methods: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores >= 40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire). Results: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively). Conclusions: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.

PURPOSE:Costal cartilage resection with or without rib resection is the gold standard surgery for slipping rib syndrome. Minimally invasive restoration of normal anatomy via nonabsorbable sutures has been described in the adult population with encouraging results. We sought to assess the efficacy of minimally invasive sutured fixation of the hypermobile rib in the pediatric population. METHODS:A retrospective review was performed at Mayo Clinic involving 31 pediatric patients diagnosed with slipped rib syndrome. Minimally invasive sutured open reduction internal fixation was performed between 2020 and 2022. The standardized Örebro Musculoskeletal Pain Screening Questionnaire was given at dedicated time points pre- and post-operatively to assess efficacy. Significance was determined via the Wilcoxon rank sum test. RESULTS:SRS was diagnosed clinically in 31 patients (24 females, 7 males, 1220 years-old). Symptoms were present for an average of 18.9 months and patients had seen an average of 4.7 specialists. Traumatic causes were identified in three patients and eight patients had hypermobility. At one month follow up, there were no surgical complications and patients reported significantly less pain (p < 0.001). Preoperative analgesics reduced by 80%. Ultimately, seven patients underwent a second operation; three patients underwent a third operation; one patient underwent five total operations. Recurrent pain was reported in six patients. Only nine patients followed-up at 1-year post-operation. CONCLUSION:Pediatric patients with SRS demonstrated an early positive response to suture fixation without costal cartilage excision. Reoperation and recurrent pain, however, remain significant in this population. LEVEL OF EVIDENCE:Level IV. TYPE OF STUDY:Case series with no comparison group.

This Viewpoint dismantles the notion of a “good death” in pediatrics using quotes from bereaved parents and provides actionable alternatives to improve quality end-of-life care for dying children and their families.

Outcomes1. Using a critical historical approach, participants will evaluate why, how, and for/with who the “good death” concept emerged and how it has persisted over time.2. The interprofessional authorship team will illustrate and deconstruct the “good death” concept into actionable components that can be used to improve clinical care and research inquiry.Key MessageThe concept of a “good death” is compelling in its simplicity. Yet, defining a “good death” for a child offers little utility amidst end-of-life and early bereavement. Moreover, pursuing a “good death” may introduce judgements that perpetuate, rather than mitigate distress among families and clinicians navigating a child's death.BackgroundGiven challenges in measuring complicated, individualized end-of-life experiences, a “good death” emerged as a simple and compelling ideal to improve end-of-life care in highly medicalized care settings. However, it offers little utility in the complicated world we step into alongside dying children and their families.Critical examinationAttempting to erase complexity when asking about death only further removes us from the reality of dying. Further, terminology that implies a child's death is potentially “good” when specified criteria are met imbues a value judgement into already delicate end-of-life experiences that can exact lasting harms on the surviving family. Predominant narratives surrounding a “good death”, often filtered through clinician and/or researcher lenses, include avoidance of intensive interventions and optimization of comfort, connection, and alignment/agreement between all care partners. These references that imply a “good death” is free of intensive interventions may alienate parents for whom not “doing everything” would violate deeply held personal or religious beliefs. Enduring “good death” narratives can also lead clinicians to struggle with moral distress or injury when a child's end-of-life experience doesn't meet their prescribed notion of a “good death”.ImplicationsContinuing to utilize a “good death” as a metric in clinical care and research may perpetuate harmful assumptions and biases that leave families’ needs underserved and clinicians morally distressed, rather than improving end-of-life experiences. Using this vague and reductive approach to characterize a child's death generates little clinical utility: what exactly made the death “good”?RecommendationsConsidering the risk-to-benefit ratio, the concept of a “good death” potentiates substantial harm while offering minimal, if any, benefit. We propose breaking down this concept into its actionable elements, e.g., compassionate communication, timely and thorough symptom management, situational awareness, meaning and memory making opportunities; offers a more clinically useful approach.KeywordsLoss, Grief, Bereavement; Existential / Humanities / Spirituality / Religion

Outcomes1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those challenges are systemic, and propose and assess potential levers for improving the utility of respite care system.2. Using intervention modeling, participants will self-report the ability to apply research findings and reflections from the group discussion to design alternative models for respite care.Key MessageEarly ethnographic data illuminates creative ways family caregivers of children with medical complexity and serious illness find rest and rejuvenation within the limited existing respite system. Sharing respite care models across geographies contributes to the emerging science of family caregiver support and the project of reimagining respite for patients and their families.AbstractChildren with medical complexity (CMC) receive more palliative care services than any other group, but support for these children and their family caregivers remains strikingly inadequate. Demands on CMC family caregivers are complex and unrelenting. Intended to offer relief from the constancy of caregiving, respite care is rarely available and often not used, suggesting that it falls short of meeting family caregivers’ needs for rest and rejuvenation. Few studies have explored CMC family caregiver experiences of respite care, and no research has focused on their need for and experiences of rest and rejuvenation.Early ethnographic data suggests that CMC family caregivers seek rejuvenation over “sleep” or “rest” which is often recommended by clinicians, friends, and family members. They report that the existing respite care system does not meet their needs and express hope for alternative models of respite to support rejuvenation.This interactive educational session will be co-facilitated by a palliative care physician-anthropologist and a palliative care psychology clinician-scientist who is also a bereaved parent. We will share early ethnographic findings to stimulate the exchange of ideas among participants for how to reimagine respite care across geographies and healthcare systems. Specifically, we will ask participants to share their knowledge about existing respite care systems, current efforts to improve respite care, and their patients’ and research participants’ input on how respite care could be disrupted to better meet CMC family caregivers’ needs. In doing so, we aim to contribute to our ongoing exploration of families’ respite needs, the existing respire care system, and the emerging science of family caregiver support.KeywordsModels of Palliative Care Delivery / Resilience / Well being

ContextPediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams.ObjectivesThis special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues.MethodsExisting literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC.ResultsAs children with serious illness are at risk for mental and physical health symptoms, psychologists’ specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being.ConclusionsWith strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families.

INTRODUCTION:Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. METHODS:Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. RESULTS:There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p = .082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p = .98). Consults for solid tumors increased from 22% (n = 4) pre-embedment to 60% (n = 18) post-embedment (p < .05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p < .05). CONCLUSIONS:Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.

OBJECTIVE:Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty.METHODS:A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly.RESULTS:The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality.CONCLUSIONS:Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.

Objective(s).To describe sources of emotional support among caregivers of CMCs and examine the relationship between sources of emotional support and caregiver self-reported mental health.Method(s).Secondary analysis of the combined 2016-2019 dataset National Survey of Children's Health.Children in the sample were categorized into 3 groups: children with no special health care needs (non-CSHCNs), children with special health care needs (CSHCNs), and children with medical complexity (CMCs).Our primary outcomes were caregivers' sources of emotional support.We examined sources of emotional support by medical complexity status via chisquared analysis.Multivariate logistic regression adjusted for sociodemographic factors examined the relationship between sources of emotional support and mental health among CMC caregivers.Results.Compared to caregivers of non-CSHCNs and CSHCNs, significantly higher proportions of CMC caregivers reported receiving emotional support from a health care provider (19.4%, 29.4%, and 40.1%, respectively), mental health professional (4.8%, 16.8%, and 30.6%), religious leader (23.0%,25.6%, and 27.1%), advocacy group (2.0%, 7.1%, and 21.3%), and peer-support group (11.7%, 13.5%, and 19.5%) (all p < 0.001).Fewer CMC caregivers reported receiving emotional support from a spouse or domestic partner (60.3%, 58.0%, and 53.5%; p < .001).Among caregivers of CMCs, receiving emotional support from a religious leader (aOR 0.5), advocacy group (aOR 0.5), or peer support group (aOR 0.4) was associated with lower likelihood of reporting poor or fair mental health.Receiving emotional support from a mental health professional was associated with significantly higher odds of reporting poor or fair mental health (aOR, 2.4) among CMC caregivers.Conclusion(s).Caregivers of CMCs report receiving emotional support from diverse sources.Emotional support from a religious entity, advocacy group, or peer support group was associated with lower odds of poor or fair mental health.Impact.Efforts to improve the mental health of CMC caregivers should consider integrating religious, advocacy, and peer sources of emotional support.

Preliminary results suggest clinical procedure demonstrations in anatomy effectively improve academic performance. Knowledge retention most dramatically improves when physical demonstrations are provided, regardless of the demonstrator's clinical experience level. Lastly, the integration of clinical procedure demonstrations has no measurable relationship to student learning approach.

Introduction: Shared decision-making (SDM) about anticoagulant treatment in patients with atrial fibrillation (AF) is widely recommended but its effectiveness is unclear. We assessed the extent to which using an SDM tool promotes high-quality SDM. Hypothesis: SDM will improve communication quality, knowledge, and decisional conflict and will translate to improved medication adherence and outcomes. Methods: In this multicentre encounter-randomized trial, we included patients with nonvalvular AF considering starting/reviewing anticoagulation, and their clinicians. We compared usual care with or without ANTICOAGULATION CHOICE, an SDM conversation tool for use during the clinical encounter that presents individualized risk estimates and compares anticoagulation options across patient important issues. Results: We enrolled and video-recorded 922 patient-clinician encounters. So far, our data have shown that participants in both arms reported near-optimal communication quality, knowledge, and decisional conflict (JAMA IM-2020). Patients in intervention-arm estimated their stroke risks more accurately and were more involved in decision-making (JAMA IM-2020), clinicians were more satisfied (JAMA IM-2020), and cost conversation were more common (JAMA NO-2021). Use of the intervention had no effect on treatment decisions, encounter duration (JAMA IM-2020), treatment adherence, clinical outcomes (JAHA-epub) or patient-perceived sense of the care plan (PEC-epub). New analyses have shown that compared to eligible white participants, black participants more frequently did not enrol to the study. Enrolment of Black, indigenous, and people of colour benefited most form including and prioritizing practices most likely to care for them. We found no evidence of contamination (tool use, functional, or learned) between study arms. Conclusions: Use of an SDM tool improved some measures of SDM quality, without affecting treatment decisions and their sensibility, encounter duration, patient adherence, or clinical outcomes. Our results should calibrate expectations as to what could be accomplished by implementing SDM tools about anticoagulation in the care of patients with AF

Shared decision making (SDM) has been advocated to improve patient care, patient decision acceptance, patient-provider communication, patient motivation, adherence, and patient reported outcomes. Documentation of SDM is endorsed in several society guidelines and is a condition of reimbursement for selected cardiovascular and cardiac arrhythmia procedures. However, many clinicians argue that SDM already occurs with clinical encounter discussions or the process of obtaining informed consent and note the additional imposed workload of using and documenting decision aids without validated tools or evidence that they improve clinical outcomes. In reality, SDM is a process and can be done without decision tools, although the process may be variable. Also, SDM advocates counter that the low-risk process of SDM need not be held to the high bar of demonstrating clinical benefit and that increasing the quality of decision making should be sufficient. Our review leverages a multidisciplinary group of experts in cardiology, cardiac electrophysiology, epidemiology, and SDM, as well as a patient advocate. Our goal is to examine and assess SDM methodology, tools, and available evidence on outcomes in patients with heart rhythm disorders to help determine the value of SDM, assess its possible impact on electrophysiological procedures and cardiac arrhythmia management, better inform regulatory requirements, and identify gaps in knowledge and future needs.

Nearly one‐third of medical students experience significantly higher anxiety levels as compared to their non‐medical counterparts. Elevated anxiety levels increase the likelihood of developing depression and result in loss of personal relationships and a lower quality of life. Specifically, in medical students, increased anxiety is correlated with decreased empathy, professionalism, and may negatively impact academic performance. Peer‐support programs benefit not only student participants but also peer volunteers. Programs like these provide psychosocial support that students are otherwise without, as well as encourage professional development. We hypothesized that peer‐support participants will experience decreased overall and exam‐related anxiety, feel more prepared, and perform higher academically after participating in the program.

Background Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3-part conversation tool. Methods The authors enrolled English-speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability. Results Thirty-seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post-D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread. Conclusions The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.

OBJECTIVE:To understand the perspectives of persons' living with diabetes about the increasing cost of diabetes management through an analysis of online health communities (OHCs) and the impact of persons' participation in OHCs on their capacity and treatment burden.PATIENTS AND METHODS:A qualitative study of 556 blog posts submitted between January 1, 2007 and December 31, 2017 to 4 diabetes social networking sites was conducted between March 2018 and July 2019. All posts were coded inductively using thematic analysis procedures. Eton's Burden of Treatment Framework and Boehmer's Theory of Patient Capacity directed triangulation of themes with existing theory.RESULTS:Three themes were identified: (1) cost barriers to care: participants describe individual and systemic cost barriers that inhibit prescribed therapy goals; (2) impact of financial cost on health: participants describe the financial effects of care on their physical and emotional health; and (3) saving strategies to overcome cost impact: participants discuss practical strategies that help them achieve therapy goals. Finally, we also identify that the use of OHCs serves to increase persons' capacity with the potential to decrease treatment burden, ultimately improving mental and physical health.CONCLUSION:High cost for diabetes care generated barriers that negatively affected physical health and emotional states. Participant-shared experiences in OHCs increased participants' capacity to manage the burden. Potential solutions include cost-based shared decision-making tools and advocacy for policy change.

OBJECTIVES:Purposeful SDM posits four modes of shared decision making (SDM). The use of each mode depends on the type of problem of care that is being addressed. We sought to identify how current observer-based SDM measures apply to each mode of Purposeful SDM. METHODS:Four coders, working independently, evaluated 192 items pertaining to 12 observer-based SDM process measures. They classified the items into 6 themes that vary across Purposeful SDM modes and then into one of the four modes (weighing, negotiating, problem-solving, developing insight). Disagreements were resolved by consensus. RESULTS:The items were classified as pertaining to the following themes: problem (28), roles/participation (84), options (62), preferences (21), decision (15), and evaluation (6). They were then classified as pertaining particularly to the SDM modes of weighing (54), negotiating (5), problem-solving (0), and developing insight (0) modes, with 191 items applying broadly to all modes of Purposeful SDM. CONCLUSIONS:Observer-based SDM measures describe behaviors pertinent to all modes but lack items sensitive to behaviors particular to some modes of SDM. PRACTICE IMPLICATIONS:New or revised observer-based measures of the SDM process could help estimate the extent to which the appropriate SDM mode is being used to address the patient's problem.