Abstract

Background

Significance

Proposed Methods

Research Trajectory

Aims

Children with Complex Chronic Conditions: A Formative Study to Support Development of

Care Coordination InitiativesShannon 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

Strategy Sample Goal Analysis

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 groups Health 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

Quantitative Qualitative

Data CollectionMedical record review

Data CollectionOne-on-one interviews

and focus groups

Data AnalysisDescriptive statisticsMultiple regression

Data AnalysisDirected content analysis

OutcomeProfile of demographic and clinical variables associated with measures of hospital admissions and ED visits

OutcomeThematic 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

OutcomeExpanded risk profile of multi-level risk and protective factors for hospital admissions

and ED visits

Hypothesis TestingMulti-site

Larger sampleWider 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