1. Abstract Background Significance Proposed Methods Research Trajectory Aims Children with Complex Chronic Conditions: A Formative Study to Support Development of Care Coordination Initiatives Shannon M. Hudson, RN, BSN, CCRN, PhD(c); Marilyn P. Laken, PhD, RN; William H. Hester, MD, FAAFP; Gayenell S. Magwood, PhD, RN; Martina Mueller, PhD; Susan D. Newman, PhD, RN, CRRN Children with complex chronic conditions (CCC) have high levels of health care utilization, such as frequent hospitalizations and/or emergency department (ED) visits, that contribute to substantial costs of care. The purpose of this descriptive pilot study is to explore the risk and protective factors associated with hospital admissions and ED visits in infants and young children with CCC. Convergent parallel mixed methods design with medical record review of children with CCC, interviews with parents/caregivers, and focus groups with health care providers will be conducted. This study will be the first step in a research trajectory leading to the development of a care coordination intervention designed to minimize risk factors and bolster protective factors. Children with complex chronic conditions: Have health conditions lasting >12 months, requiring specialty care and hospitalization Have high rates of health care utilization and resource use Along with families, face financial and psychosocial challenges Gaps in the literature on hospital admissions and ED visits to be addressed include: Few studies in populations solely of children with CCC Few studies in rural settings Few studies explored family and/or provider perceptions Aim 1: To identify a cohort of infants and young children with CCC through retrospective medical record review at McLeod Regional Medical Center (MRMC) Aim 2: To evaluate the relationship between demographic and clinical variables and hospital admissions and ED visits to identify risk and protective factors in the cohort of children with CCC Aim 3: To examine factors contributing to hospital admissions and ED visits experienced by children with CCC through qualitative methods Goal of this study : generate hypotheses that certain factors place infants and young children with CCC at risk for or protect against hospital admissions and/or ED visits Additional goals: assess feasibility of methods; assess rurality as a risk factor Future studies using prospective design to test hypotheses with: multi-site setting, larger sample, and wider age range Studies may be conducted to further explore rurality as a risk factor Applications to the medical home concept in children with CCC Care coordination interventions developed to minimize risk factors and bolster protective factors in children with CCC, possibly with a focus on rural-dwelling populations Interventions tested, refined, implemented, and evaluated Convergent parallel mixed methods design: Quantitative and qualitative data gathered concurrently and analyzed separately Quantitative and qualitative findings compared and merged Quantitative phase: Retrospective cohort with medical record review Records for children with CCC born 1/1/08 to 6 months prior to set end point searched for index admissions with ICD9 codes for CCC Demographic data, clinical data, and data on hospital admissions and ED visits collected Multiple regression modeling to determine the demographic and clinical variables potentially associated with measures of hospital admissions and ED visits Qualitative phase: One-on-one interviews with parents/primary caregivers Focus groups with health care providers in the pediatric inpatient, ED, and primary care settings Explore parents’/caregivers’ and health care providers’ experiences and perceptions of risk and protective factors associated with hospital admissions and ED visits in children with CCC Interviews and focus groups audio recorded, transcribed verbatim, and analyzed using directed content analysis with the risk and protective factors model and social ecological theory as frameworks for analysis Data merging: Quantitative and qualitative data compared to determine convergence/divergence Outcome: a hypothetical expanded risk profile of the factors associated with hospital admissions and ED visits in children with CCC Copyright OQUIN 2012 StrategySampleGoalAnalysis Retrospect- ive medical record review Records of children with CCC born 1/1/08 to 6 months prior to set end point admitted to MRMC Identify demographic and clinical characteristics associated with measures of hospital admissions & ED visits Multiple regression analysis Semi- structured interviews Parents/primary caregivers of children with CCC born 1/1/08 to 6 mo prior to set end point with  1 admis- sions or ED visits; stratified into urban & rural-dwelling Explore the experience of hospital admissions and/or ED visits and identify factors contributing to or protecting against admissions and/or ED visits Directed content analysis Focus groupsHealth care providers of children with CCC in the pediatric inpatient, ED, and primary care settings Explore provider perceptions of factors contributing to or protecting against hospital admissions and/or ED visits Directed content analysis Table 1: Strategies to address study aims QuantitativeQualitative Data Collection Medical record review Data Collection One-on-one interviews and focus groups Data Analysis Descriptive statistics Multiple regression Data Analysis Directed content analysis Outcome Profile of demographic and clinical variables associated with measures of hospital admissions and ED visits Outcome Thematic presentation of risk & protective factors for hospital admissions & ED visits at mul- tiple levels of influence & inter- action as perceived by parents / caregivers & health providers Outcome Expanded risk profile of multi-level risk and protective factors for hospital admissions and ED visits Hypothesis Testing Multi-site Larger sample Wider age range of sample Prospective design Intervention development, testing, refinement, implementation, & evaluation Coordinating care using ecological approach at multiple points in the system to address multi-level risk factors and bolster multi-level protective factors Figure 1: Model of research components and trajectory Current Study Future Studies Results merged