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.

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