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OBJECTIVES To report on first steps toward building a Life Course Intervention Research Framework (LCIRF) to guide researchers studying interventions to improve lifelong health. METHODS The Life Course Intervention Research Network, a collaborative national network of >75 researchers, service providers, community representatives and thought leaders, participated in an iterative review process. Building on the revised Medical Research Council Guidance for Developing and Evaluating Complex Interventions, they identified 12 additional key models with features for inclusion in the LCIRF, then incorporated the 12 characteristics identified by the Life Course Intervention Research Network as actionable features of Life Course Interventions to produce the new LCIRF. RESULTS The LCIRF sets out a detailed step-wise approach to intervention development: (1) conceptualization and planning, (2) design, (3) implementation, (4) evaluation, and (5) spreading and scaling of interventions. Each step is infused with life course intervention characteristics including a focus on (1) collaborative codesign (2) health optimization, (3) supporting emerging health development capabilities (4) strategic timing, (5) multilevel approaches, and (6) health equity. Key features include a detailed transdisciplinary knowledge synthesis to inform intervention development; formation of strong partnerships with family, community, and youth representatives in intervention codesign; a means of testing the impact of each intervention on biobehavioral processes underlying emerging health trajectories; and close attention to intervention context. CONCLUSIONS This first iteration of the LCIRF has been largely expert driven. Next steps will involve widespread partner engagement in framework refinement and further development. Implementation will require changes to the way intervention studies are organized and funded.

Life course intervention research requires a thorough understanding of complex factors that interact to affect health over time. Partnerships with families and communities are critical to understanding these interconnections and identifying effective interventions. Here, family and community engagement are presented, aligned with the 5 phases of the life course intervention research framework: planning, design, implementation, evaluation, and translation. During planning, the researcher considers their own starting position and what they need to learn from families and the community. The design phase produces a plan for family engagement that is layered, iterative, and includes qualitative methods that will inform life course modeling and the research process. The implementation phase includes administrative actions such as creating opportunities for contributions and providing compensation to family and community partners. The evaluation phase requires measurement of the quality of partnerships with families and community and includes making adjustments as indicated to improve these partnerships. This phase also calls for reflection on the impact these partnerships had on the intervention, including if they made a difference for those being served. During translation, the researcher works with all partners, including families and communities, about follow up steps toward project continuation, replication, or completion. The researcher also works collaboratively in determining how the study results are shared. A holistic approach to health over the life course that is designed and executed in partnership with families and their community can generate research findings with broad practical applicability and strong translational potential.

OBJECTIVES To develop an initial list of characteristics of life course interventions to inform the emerging discipline of life course intervention research. METHODS The Life Course Intervention Research Network, a collaborative national network of >75 researchers, service providers, community representatives, and thought leaders, considered the principles, characteristics, and utility of life course interventions. After an in-person launch meeting in 2019, the steering committee collaboratively and iteratively developed a list of life course intervention characteristics, incorporating a modified Delphi review process. RESULTS The Life Course Intervention Research Network identified 12 characteristics of life course interventions. These interventions (1) are aimed at optimizing health trajectories; (2) are developmentally focused, (3) longitudinally focused, and (4) strategically timed; and are (5) designed to address multiple levels of the ecosystem where children are born, live, learn, and grow and (6) vertically, horizontally, and longitudinally integrated to produce a seamless, forward-leaning, health optimizing system. Interventions are designed to (7) support emerging health development capabilities; are (8) collaboratively codesigned by transdisciplinary research teams, including stakeholders; and incorporate (9) family-centered, (10) strengths-based, and (11) antiracist approaches with (12) a focus on health equity. CONCLUSIONS The intention for this list of characteristics of life course interventions is to provide a starting point for wider discussion and to guide research development. Incorporation of these characteristics into intervention designs may improve emerging health trajectories and move critical developmental processes and pathways back on track, even optimizing them to prevent or reduce adverse outcomes.

* Abbreviations: CYSHCN — : children and youth with special health care needs FPL — : federal poverty level US children and youth rely on insurance to access health care.1 Families living in or near poverty may qualify for public coverage with income thresholds for eligibility varying from 138% to 325% of the federal poverty level (FPL) across states.2 Other families may have commercial insurance through an employer or direct purchase.3 Families lacking insurance pay out-of-pocket for health care. The adequacy of insurance varies across insurance types,4 with some providing better coverage and access to care than others.5,6 Households with children and youth with special health care needs (CYSHCN) with low-to-middle income (ie, 200% to 399% of FPL) may be particularly sensitive to insurance variations, yet little is known about family perceptions of insurance adequacy.1,3 We compared these perceptions across insurance types for CYSHCN living in low-to-middle income families. We performed a retrospective analysis of 4321 responses of parents of CYSHCN aged 0 to 18 years in the 2016–2017 National Survey of Children’s Health, with family income that was 200% to 399% of FPL, representing 6 056 833 CYSHCN nationally. National Survey of Children’s Health uses … Address correspondence to Jay G. Berry, MD MPH, Boston Children’s Hospital, 21 Autumn St, Room 212.2, Boston, MA 02115, E-mail: Jay.berry{at}childrens.harvard.edu

Children may experience medical trauma when undergoing medical procedures even when procedures are minor. While virtual reality (VR) is effective for managing procedural pain and anxiety, few studies address how families feel about using VR. We explore pediatric patient and guardian views regarding the acceptability of using VR during procedures to mitigate medical trauma. Semi-structured qualitative interviews with 18 patient-guardian dyads at a tertiary outpatient infusion center for inflammatory bowel disease (IBD) treatment. Interviews explored how VR may change the infusion experience, including benefits, risks, and recommendations for clinical integration. Interviews were recorded, transcribed, and analyzed in ATLAS.ti. Two coders used a 3-step coding approach to: (1) identify themes; (2) develop a codebook and code transcripts using the constant comparative method; and (3) describe themes/patterns. Potential benefits of VR were distraction from infusion-related anxiety and pain and generating excitement for the appointment. Potential challenges were VR-side effects (dizziness, nausea), limited mobility during the procedure, disorientation/immersion leading to shock upon IV-placement, and a lost opportunity to build coping skills. Families queried when VR should first be introduced and when during the appointment use would be optimal. Parents expressed concerns about pushing VR when their child was already under stress. A limited number of families doubted the utility of VR. Patients and parents found VR to be an acceptable option for helping to manage medical trauma during infusions but highlighted that the VR experience must be carefully crafted to avoid unintended consequences, including lost opportunities to build resilience.

Objectives Children with inflammatory bowel disease (IBD) are at increased risk for poor mental health. The etiology of this risk is not clear, though may be related to the disease, its treatment, and/or the experience of these. We sought to describe the challenges that children with IBD and their families face in living with a chronic condition and undergoing repeated intravenous infusions; and identify coping mechanisms to understand how medical systems may support resilience. Methods Semistructured qualitative interviews with 18 patient-guardian dyads at a tertiary outpatient infusion center, explored feelings related to IBD, the infusion process, and coping. Interviews were recorded, transcribed, and analyzed in ATLAS.ti. Two coders identified themes; developed a codebook and coded transcripts using the constant comparative method; and described themes/patterns. Results Participants identified challenges related to IBD (unpredictable nature, disrupted normalcy, treatment decisions, managing relationships, life transitions) and a subset of challenges related to the infusion procedure (anxiety of unknown, managing pain/anxiety during IV placement, logistics). Participants coped through social support, cognitive strategies (positive attitude) and/or behavioral strategies for managing emotions (preparation for intravenous [IV] placement), and confidence in the medical care. By employing these coping strategies, participants came to accept IBD, adapt to the "new norm," and learned life lessons and resilience. Conclusions To support coping, clinical teams might provide anticipatory guidance to decrease anxiety of the unknown and identify cognitive-behavioral strategies for managing emotions. Delivery systems that build relationships, maintain normalcy, and consider needs of the family may further facilitate coping.

OBJECTIVES: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach. METHODS: Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains. RESULTS: The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized. CONCLUSIONS: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.

Key Points Question How do readmission rates vary across complex chronic disease for adolescents and young adults with increasing age? Findings In this cross-sectional study of 215 580 adolescents and young adults hospitalized for treatment of complex chronic diseases (cystic fibrosis, type 1 diabetes, inflammatory bowel disease, spina bifida, or sickle cell anemia), 30-day hospital readmission rates varied significantly across disease categories. As age increased from 15 to 30 years, unadjusted, 30-day, unplanned hospital readmission rates increased significantly for all complex chronic disease cohorts. Meaning Further attention is needed to hospital discharge care, self-management, and prevention of readmission in adolescents and young adults with complex chronic disease., This cross-sectional study assesses variation in 30-day unplanned hospital readmission rates among adolescents and young adults with complex chronic disease as they advance in age., Importance Adolescents and young adults (AYA) who have complex chronic disease (CCD) are a growing population that requires hospitalization to treat severe, acute health problems. These patients may have increased risk of readmission as demands on their self-management increase and as they transfer care from pediatric to adult health care practitioners. Objective To assess variation across CCDs in the likelihood of readmission for AYA with increasing age. Design, Setting, and Participants Retrospective 1-year cross-sectional study of the 2014 Agency for Healthcare Research and Quality Nationwide Readmissions Database for all US hospitals. Participants were 215 580 hospitalized individuals aged 15 to 30 years with cystic fibrosis (n = 15 213), type 1 diabetes (n = 86 853), inflammatory bowel disease (n = 48 073), spina bifida (n = 7819), and sickle cell anemia (n = 57 622) from January 1, 2014, to December 1, 2014. Exposures Increasing age at index admission. Main Outcomes and Measures Unplanned 30-day hospital readmission. Readmission odds were compared by patients’ ages in 2-year epochs (with age 15-16 years as the reference) using logistic regression, accounting for confounding patient characteristics and data clustering by hospital. Results Of 215 580 participants, 115 982 (53.8%) were female; the median (interquartile range) age was 24 (20-27) years. Across CCDs, multimorbidity was common; the percentages of index hospitalizations with 4 or more coexisting conditions ranged from to 33.4% for inflammatory bowel disease to 74.2% for spina bifida. Thirty-day hospital readmission rates varied significantly across CCDs: 20.2% (cystic fibrosis), 19.8% (inflammatory bowel disease), 20.4% (spina bifida), 22.5% (type 1 diabetes), and 34.6% (sickle cell anemia). As age increased from 15 to 30 years, unadjusted, 30-day, unplanned hospital readmission rates increased significantly for all 5 CCD cohorts. In multivariable analysis, age trends in the adjusted odds of readmission varied across CCDs. For example, for AYA who had cystic fibrosis, the adjusted odds of readmission increased to 1.9 (95% CI, 1.5-2.3) by age 21 years and remained elevated through age 30 years. For AYA who had type 1 diabetes, the adjusted odds of readmission peaked at ages 23 to 24 years (odds ratio, 2.3; 95% CI, 2.1-2.6) and then declined through age 30 years. Conclusions and Relevance These findings suggest that hospitalized AYA who have CCDs have high rates of multimorbidity and 30-day readmission. The adjusted odds of readmission for AYA varied significantly across CCDs with increasing age. Further attention is needed to hospital discharge care, self-management, and prevention of readmission in AYA with CCD.

The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders. The items for the FCCA scale were initially developed by families of children and youth with special needs in partnership with pediatric providers and researchers. Using an Institutional Review Board-approved research protocol, the questions were revised based on input from focus groups of diverse parents in three states. Parental responses (N = 790) to the revised 59-item survey were collected online from families in 49 states. Item distributions uniformly showed excellent spread. A principal axes factor analysis confirmed the existence of a single factor. Rasch modeling item analyses identified a reduced subset of 24 items that demonstrated excellent psychometric properties. All items met the criteria for a linear Rasch scale. Empirical evidence in support of the construct validity of the 24-item measure was derived: all items had a positive and substantial item–total correlation; person alpha scale reliability was >0.80 and the item reliability was >0.90; both separation indices were >2.0; infit and outfit statistics were within 0.5–1.5; and item difficulties ranged between −2 and +2 logits. Strong rank-ordered associations and large effect sizes were observed for six indicators of quality of care. This study’s family-led process produced a tool, the FCCA, to measure families’ experience of care with excellent psychometric properties.