Involving people with lived experience (PLE) in medical education, which may occur with varying levels of patient and caregiver involvement, can be beneficial for patients, their caregivers, and medical students. Benefits have been demonstrated across both patient populations and learner level of training. Including PLE may be particularly impactful in medical education related to children who require comprehensive, individualized, and multidisciplinary care, such as children with medical complexity or developmental disabilities. Despite this, there is no summary of how children with medical complexities or developmental disabilities or their families/caregivers have been included in medical education for medical students, residents, and fellows. In order to advance the effective inclusion of lived experience in medical education related to this patient population, a synthesis of existing literature is needed. The purpose of this scoping review is to identify and synthesize the literature related to including the lived experiences of children with medical complexity or developmental disabilities, their families, and their caregivers in medical education and the level of engagement of people with lived experience in the process. To complete the proposed scoping review, MEDLINE, Scopus, PsycINFO, ERIC, Academic Search Premier, and Google Scholar will be searched for studies investigating patient and caregiver involvement in medical education related to children with medical complexity or developmental disabilities. Data will be extracted from studies that meet the inclusion criteria. Studies involving continuing professional development or patients that are not children with medical complexity or developmental disabilities will be excluded. Data will be extracted to identify the stage of curriculum development in which lived experience is included based on Kern’s 6-step approach. Data will also be extracted to examine the level of engagement in medical education of children with medical complexity or developmental disabilities, their families, or their caregivers. Descriptive analysis will be performed to identify the findings from the included sources pertaining to the research objective. Findings will be presented in tables, diagrams, or matrices to demonstrate how lived experience has been incorporated into the six steps of curriculum development and characterize the level of engagement of people with lived experience in this process. Results from this scoping review may identify areas of improvement for medical education, especially pertaining to the care of children with medical complexity and developmental disabilities. The findings could contribute to the development of medical school curricula that lead to improved patient outcomes.

ABSTRACT BACKGROUND Disparities in school attendance exist for children with medical complexity (CMC) due to COVID‐19. Longitudinal changes in family‐reported school safety perceptions and predictors of full‐time, in‐person school attendance are unknown. METHODS This was a prospective, longitudinal cohort study with 3 survey waves (June 2021‐June 2022) among English‐ and Spanish‐speaking families of CMC aged 5 to 17 years and pre‐pandemic school attendance. Changes in Health Belief Model perceptions and full‐time in‐person school attendance were estimated using multivariate generalized linear modeling with repeated measures. RESULTS Among 1601 respondents (52.9% of 3073 invited), 86.8% participated in all 3 surveys. School safety perceptions improved with time; however, perceived susceptibility to COVID‐19 increased. Full‐time in‐person school attendance rose from 48.4% to 90.0% from wave 1 to 3 (p < .0001), and was associated with motivation, benefits, and cues. For example, families with low compared to high motivation for in‐person attendance had 76% versus 98% predicted probability for child's school attendance, respectively at wave 3 (p < .0001). IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY Probability of full‐time in‐person school attendance was associated with several health belief model perceptions. School health policy and programs may benefit from promoting family motivation, benefits, and cues during future respiratory illness epidemics including COVID‐19. CONCLUSIONS In‐person school attendance improved for CMC over time. Opportunities exist to continue optimizing in‐person attendance and family‐perceived safety for CMC at school.

BackgroundThis study will pilot-test an innovative just-in-time adaptive intervention to reduce severe respiratory illness among children with severe cerebral palsy (CP). Our intervention program, Respiratory Exacerbation–Plans for Action and Care Transitions (RE-PACT), delivers timely customized action planning and rapid clinical response when hospitalization risk is elevated. ObjectiveThis study aims to establish RE-PACT’s feasibility, acceptability, and fidelity in up to 90 children with severe CP. An additional aim is to preliminarily estimate RE-PACT’s effect size. MethodsThe study will recruit up to 90 caregivers of children with severe CP aged 0 to 17 years who are cared for by a respiratory specialist or are receiving daily respiratory treatments. Participants will be recruited from pediatric complex care programs at the University of Wisconsin–Madison (UW) and the University of California, Los Angeles (UCLA). Study participants will be randomly assigned to receive usual care through the complex care clinical program at UW or UCLA or the study intervention, RE-PACT. The intervention involves action planning, rapid clinical response to prevent and manage respiratory illness, and weekly SMS text messaging surveillance of caregiver confidence for their child to avoid hospitalization. RE-PACT will be run through 3 successively larger 6-month trial waves, allowing ongoing protocol refinement according to prespecified definitions of success for measures of feasibility, acceptability, and fidelity. The feasibility measures include recruitment and intervention time. The acceptability measures include recruitment and completion rates as well as intervention satisfaction. The fidelity measures include observed versus expected rates of intervention and data collection activities. The primary clinical outcome is a severe respiratory illness, defined as a respiratory diagnosis requiring hospitalization. The secondary clinical outcomes include hospital days and emergency department visits, systemic steroid courses, systemic antibiotic courses, and death from severe respiratory illness. ResultsThe recruitment of the first wave began on April 27, 2022. To date, we have enrolled 30 (33%) out of 90 participants, as projected. The final wave of recruitment will end by October 31, 2023, and the final participant will complete the study by April 30, 2024. We will start analyzing the complete responses by April 30, 2024, and the publication of results is expected at the end of 2024. ConclusionsThis pilot intervention, using adaptive just-in-time strategies, represents a novel approach to reducing the incidence of significant respiratory illness for children with severe CP. This protocol may be helpful to other researchers and health care providers caring for patients at high risk for acute severe illness exacerbations. Trial RegistrationClinicalTrials.gov NCT05292365; https://clinicaltrials.gov/study/NCT05292365 International Registered Report Identifier (IRRID)DERR1-10.2196/49705

ObjectiveTo understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy. DesignQualitative research study. SettingPaediatric complex care programmes at two academic medical institutions. ParticipantsA total of n=4 focus groups were conducted with caregivers of children with severe cerebral palsy and chronic respiratory illness, n=4 with healthcare professionals, and n=1 with national experts. MethodsParticipants viewed a video summarising RE-PACT, which includes action planning, mobile health surveillance of parent confidence to avoid hospitalisation and rapid clinical response at times of low confidence. Moderated discussion elicited challenges and benefits of RE-PACT's design, and inductive thematic analysis elicited implementation barriers and facilitators. ResultsOf the 19 caregivers recruited, nearly half reported at least one hospitalisation for their child in the prior year. Healthcare professionals and national experts (n=26) included physicians, nurses, respiratory therapists, social workers and researchers. Four overarching themes and their barriers/facilitators emphasised the importance of design and interpersonal relationships balanced against health system infrastructure constraints. Intervention usefulness in crisis scenarios relies on designing action plans for intuitiveness and accuracy, and mobile health surveillance tools for integration into daily life. Trust, knowledge, empathy and adequate clinician capacity are essential components of clinical responder-caregiver relationships. ConclusionsRE-PACT's identified barriers are addressable. Just-in-time adaptive interventions for cerebral palsy appear well-suited to address families' need to tailor intervention content to levels of experience, preference and competing demands.

Journal of Hospital MedicineVolume 18, Issue 1 p. 90-94 PERSPECTIVES IN HOSPITAL MEDICINEOpen Access Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity Laura P. Chen MD, Laura P. Chen MD Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USASearch for more papers by this authorDanielle M. Gerber BA, Danielle M. Gerber BA Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USASearch for more papers by this authorRyan J. Coller MD, MPH, Corresponding Author Ryan J. Coller MD, MPH [email protected] orcid.org/0000-0003-2657-294X Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USA Correspondence: Ryan J. Coller, MD, MPH, Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, 600 Highland Ave, Madison, WI 53792, USA. Email: [email protected]Search for more papers by this author Laura P. Chen MD, Laura P. Chen MD Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USASearch for more papers by this authorDanielle M. Gerber BA, Danielle M. Gerber BA Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USASearch for more papers by this authorRyan J. Coller MD, MPH, Corresponding Author Ryan J. Coller MD, MPH [email protected] orcid.org/0000-0003-2657-294X Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USA Correspondence: Ryan J. Coller, MD, MPH, Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, 600 Highland Ave, Madison, WI 53792, USA. Email: [email protected]Search for more papers by this author First published: 23 August 2022 https://doi.org/10.1002/jhm.12948AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat THE PROBLEM Hospitalization is a relatively common occurrence for patients with medical complexity. In fact, high health care use is a defining feature of children with medical complexity (CMC).1 CMC are a heterogeneous and growing population, unified by conceptual similarities: multisystem and frequently progressive chronic conditions leading to substantial functional limitations, family-identified service needs, and high healthcare use.1 Annually, approximately 13%–20% of CMC are hospitalized2, 3 and 50%–80% of CMC healthcare spending goes to hospital care.1, 3, 4 However, some hospitalizations experienced by CMC are avoidable.5 Substantial variation in hospital utilization for CMC across regions,6 conditions,3 and emergency departments7 suggests opportunities surround us. Avoiding hospitalization for CMC is beneficial for most stakeholders. Fewer hospitalizations are in the interest of payers and aligned with those health systems engaged in risk-sharing or capitated arrangements for CMC populations. For families, hospital admissions are extremely challenging periods. In this study, we—a hospitalist, a parent of a child with medical complexity, and a complex care pediatrician—review causes of hospitalization and propose recommendations to reduce hospitalizations for CMC (Table 1). Table 1. Recommendations to reduce hospitalizations for children with medical complexity Shifting the focus of clinical care 1. Identify clinical quality measures that are linked to hospitalization 2. Design and test interventions with family partners that strengthen family capacity and address child susceptibility to serious acute illness 3. Quantify and reduce inequities in access, retention, and benefits from complex care models for diverse populations 4. Uncover active ingredients of complex care that lead to reductions in hospitalization and develop strategies to implement these activities in general outpatient settings 5. Use conceptual models and include analyses of intervention mechanisms in research Needed social and policy focus 6. Evaluate the impact of policies to support family caregivers on hospitalization rates 7. Advocate for policies that support care for children with medical complexity at home and in the community, including adequate quantities of supplies/equipment, respite, and reimbursement/workforce to reliably meet family needs Important unknowns 8. Develop adaptive interventions that can respond to the dynamic, changing nature of child and family circumstances 9. Establish an evidence base to treat common causes of acute illness or chronic disease exacerbation through rigorous clinical intervention research 10. Clarify complex care's vision, for example, as a specialty service for those with medical complexity to access, or as a set of effective activities implemented broadly throughout redesigned pediatric care NOT SIMPLY MORE CLINICAL CARE We might assume that the clinical needs intrinsic to medical complexity mean that clinical care drives CMC outcomes (such as hospitalization) to a greater extent than for general populations, where clinical care explains only 20% of population health.8 However, clinical care might, perhaps counterintuitively, play a similarly limited role in determining outcomes even for CMC. For example, common healthcare quality measures can have weak or limited relationships with hospitalization risk for CMC. Family-reported measures of ambulatory care access, experience, and process appear to poorly predict subsequent hospitalizations for CMC, even though several of these measures predict hospitalizations for children with less complex chronic illnesses.2 Ambulatory care sensitive conditions (ACSC, e.g., asthma, pneumonia, urinary tract infection) are generally considered manageable through high-quality outpatient care and therefore indicate potentially preventable hospitalization. However, research involving CMC with ACSC hospitalizations challenges this conceptualization. For example, ambulatory care measures may be poor predictors of ACSC hospitalizations for CMC despite predicting ACSC hospitalizations for children with noncomplex chronic illness.9 Receipt of outpatient care in the week prior to admission is similar for CMC whether admissions are for ACSC or not.10 Measuring different ACSCs selected for CMC (such as constipation, dystonia, medical device complications, etc.) might reveal more relationships between clinical care and hospitalization. SHIFTING THE FOCUS OF CLINICAL CARE We suspect, however, that when linking healthcare quality to hospitalizations for CMC, we may simply need to focus on different constructs (Recommendation 1). When families of CMC describe experiences leading up to hospitalization, they identify health system factors, child susceptibility to serious illness, and family capacity and resources as key determinants of hospitalization.11 Our interpretation is that family capacity and resources along with child susceptibility, likely play outsized roles in determining CMC hospitalization risk relative to conventional health system factors; these require deliberate attention (Recommendation 2). Traditional outpatient practices are often ill-equipped to powerfully influence such determinants without paradigm shifts. A growing body of research underscores how innovative clinical interventions can, in fact, reduce CMC hospitalizations. Complex care programs combine a rich tapestry of care coordination and medical care with family-centered and longitudinal multidisciplinary relationships built on trust.12 These programs plausibly affect both child susceptibility to serious illness and family capacity to a greater extent than a typical general practice because of a combination of greater time, multidisciplinary staffing, and acquired expertise. However, despite evidence demonstrating fewer hospitalizations after enrollment into complex care programs,13, 14 we still do not understand how they exert this impact.15 Moreover, data are needed to quantify inequities in access to, retention in, or benefits from complex care enrollment (Recommendation 3). As it is unclear if complex care can be practically scaled to reach all CMC, understanding how these programs reduce hospitalizations, that is, what the mechanisms and key ingredients are, is necessary to translate effective activities within non-complex care settings13 (Recommendations 4 and 5). Longitudinal mixed-methods research could generate a theoretically sound conceptual model of mechanisms through which complex care lowers hospitalizations. As one example, an innovative design might use ecological momentary assessment16 combined with ethnography among families of children and clinicians who are and are not in complex care programs to study the phenomenon of hospitalization. Causal pathways hypothesized from the model could be tested using hybrid effectiveness-implementation,17 quasi-experimental,18 or even rigorous quality improvement designs19 as new programs are started or as children are enrolled into established programs. Emerging experimental evidence highlights several promising clinical activities, such as home visiting,20, 21 tailored health crisis planning,20 and digital interventions to monitor and manage health at home.22, 23 CMC families may be able to predict when hospitalization is imminent,24, 25 and harnessing this insight might allow focused interventions to be delivered during critical periods when an illness trajectory remains modifiable. Each of these interventions can provide windows into what causes hospitalization, and which constructs should be measured to judge care quality in the future (Recommendations 1 and 5). NEEDED SOCIAL AND POLICY FOCUS Clinical innovations likely offer only part of the solution, and we believe social and policy investments are important complements to eliminating avoidable hospitalizations for CMC. In fact, avoiding the hospital in lieu of care at home for people with medical complexity was a cornerstone of landmark bipartisan legislation in the 1980s and 1990s to expand access to Medicaid home and community-based services (HCBS) waivers for long-term services and supports for individuals with disabilities. At that time, it was inconceivable and financially impossible to have a child at home with a mechanical ventilator. However, through advocacy from Katie Beckett's and other courageous families, what can be managed by families at home has changed dramatically. Arguably, a societal obligation exists to appropriately support the creation of sophisticated health systems in homes of CMC through policy, funding, and services. Amidst the many positives that come with caring for CMC at home, the challenges caregivers face can be overwhelming. In addition to the traditional demands of parenting, families of CMC manage complex health systems.26 Many must forego employment27 and most deliver unsafe quantities of health care to CMC (average > 50 h/week, with many delivering around-the-clock care).28 The supply of support personnel needed for reliable daily CMC care is inadequate, even when approved by insurance or mandated through policy.29 This includes frequent turnover and massive workforce shortages for all home health workers, such as respite, private duty nurses, certified nursing assistants, and personal care assistants. Only 3% of CMC insured by Medicaid receive formal, professional home health support services to facilitate living at home.3 Among patients needing to establish home care nursing, nursing shortages have been observed to account for 27 excess hospital days per patient.30 The RAISE (Recognize, Assist, Include, Support and Engage) Family Caregiver Act, passed in 2018, directs Health and Human Services to develop a national family caregiving strategy, including respite options, care coordination, and financial security. Newer proposed policies such as the HCBS Access Act would make HCBS mandatory via Medicaid, thus protecting these services from being removed at the state level. Paying trained family caregivers, for example, as certified nursing assistants,31 is a necessary strategy, but not sufficient to solve the critical workforce shortage facing all individuals with disabilities. Although common sense suggests that addressing these well-recognized challenges of CMC caregiving at home would likely prevent hospitalizations and improve other important outcomes, actual research evidence is sparse. Among children with autism spectrum disorders, HCBS waivers have been associated with fewer unmet needs.32 Among older adults, HCBS appears associated with fewer hospitalizations,33 and removal of HCBS has been associated with increased hospitalization rates.34 Additional policy evaluations should link CMC hospitalization rates with policy implementation across states. Future studies could apply new measures of pediatric home care quality35 to identify associations between quality and hospitalization rates. Such data can help strengthen financial arguments proposed to offset the policy investments3, 29 (Recommendations 6 and 7). Importantly, CMC experience substantially greater negative social determinants of health than non-CMC. For example, 51% live in families with income less than 200% of the federal poverty level.36 While caring for CMC is difficult for any family, it is substantially more difficult in the face of poverty, racism, housing instability, adverse childhood experiences, mental illness, and other challenges. Undoubtedly, these social determinants influence child susceptibility to acute illness and family capacity and resources. Larger studies of hospital utilization illustrate crude associations with demographics, including race/ethnicity or public insurance.37 CMC living in communities with greater resources, such as access to health care, clean air, quality schools and safe housing spend less time in the emergency department and fewer days hospitalized.38 The influence of more specific social determinants of health and hospitalizations for CMC comes primarily from smaller studies, often among CMC in complex care programs, making associations harder to interpret.39, 40 Avoidable hospitalizations are a likely consequence, but confirmatory research is limited. IMPORTANT UNKNOWNS There are additional important unknowns to eliminating avoidable hospitalizations for CMC. First, the population of CMC is heterogeneous, and there are presumably inconsistent intervention effects, where effectiveness in one subgroup may not translate to effectiveness in another subgroup. Second, hospital risk for CMC is dynamic. One difficult year may not predict another,41 and understanding how to tailor interventions to match changing risks is essential (Recommendation 8). Third, evidence guiding clinical treatment for common conditions prompting CMC hospitalization is scant. Clinical trials to identify effective treatments for high-priority clinical conditions facing CMC are needed, and hospitalization may often be an appropriate trial outcome (Recommendation 9). Finally, there is an opportunity to clarify the national vision for pediatric complex care, which begs many questions, including whether we aspire for all CMC to have the opportunity to access this specialized model or whether we aspire to have a future where all pediatric care integrates the most meaningful aspects learned from specialized complex care models (Recommendation 10). CONCLUSION Although CMC are a relatively small pediatric population, this topic has broad relevance. Disability and medical complexity can happen to any individual at any time in their lives. Interventions that replace avoidable hospitalizations with highly supportive home services likely improve other meaningful clinical and social outcomes, and may translate to individuals with less complex chronic illnesses. Robust home and community support will likely lead to fewer hospitalizations and broader societal benefits. ACKNOWLEDGMENT Research reported in this publication was supported by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award Number R34HL153570. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. CONFLICT OF INTEREST The authors declare no conflict of interest. REFERENCES 1Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. 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Gerontologist. 2009; 49(2): 154- 165. doi:10.1093/geront/gnp020 35Foster C, Kaat AJ, Shaunfield S, et al. PediHome: development of a family-reported measure of pediatric home healthcare quality. Acad Pediat. Published online April 16, 2022. doi:10.1016/j.acap.2022.04.004 36Berry JG, Harris D, Coller RJ, et al. The interwoven nature of medical and social complexity in US children. JAMA Pediat. 2020; 174(9): 891- 893. doi:10.1001/jamapediatrics.2020.0280 37Berry JG, Hall DE, Kuo DZ, et al. Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals. JAMA. 2011; 305(7): 682- 690. doi:10.1001/jama.2011.122 38Fritz CQ, Hall M, Bettenhausen JL, et al. Child opportunity Index 2.0 and acute care utilization among children with medical complexity. J Hosp Med. 2022; 17(4): 243- 251. doi:10.1002/jhm.12810 39Foster CC, Simon TD, Qu P, et al. Social determinants of health and emergency and hospital use by children with chronic disease. Hosp Pediat. 2020; 10(6): 471- 480. doi:10.1542/hpeds.2019-0248 40Thomson J, Butts B, Camara S, et al. Neighborhood socioeconomic deprivation and health care utilization of medically complex children. Pediatrics. 2022; 149(4):e2021052592. doi:10.1542/peds.2021-052592 41Agrawal R, Hall M, Cohen E, et al. Trends in health care spending for children in Medicaid with high resource use. Pediatrics. 2016; 138(4):e20160682. doi:10.1542/peds.2016-0682 Volume18, Issue1January 2023Pages 90-94 ReferencesRelatedInformation