510 - Critical Components of a Medical Home for Children with Medical Complexity

Publication Number: 510.4172

Kristina Malik, University of Colorado/Children's Hospital Colorado, Denver, CO, United States; Ashley C. Dafoe, University of Colorado School of Medicine, Aurora, CO, United States; Katelyn S. Holler, University of Colorado School of Medicine, Denver, CO, United States; Christopher Stille, University of Colorado School of Medicine, Aurora, CO, United States

Background: The Medical Home is a health care model that improves patient and family outcomes and reduces unmet health care needs. Children with medical complexity (CMC) have increased unmet needs compared to non-complex peers. While this population could benefit greatly from the medical home model (i.e., care coordination), national survey data shows CMC are less likely to report having a medical home. Caregivers can provide the needed insight around the important aspects of medical homes for CMC.

Objective: To identify the critical components of a medical home for CMC and their families.

Design/Methods: Participants were recruited from a single complex care program which provided two models of care (primary care and consultative care). Semi-structured interviews with caregivers of CMC were conducted. The study team developed an interview guide using a phenomenological approach; medical home was defined as per American Academy of Pediatrics definition during the interview. Interviews were audio recorded and professionally transcribed. A codebook was developed through iterative open coding by two members of the study team. Transcripts were coded in Atlas.ti with 20% double coding. The coded transcripts were then queried and summarized. Themes were developed through iterative team discussion. The caregiver of a CMC participated as a parent partner and was involved in developing the aims, grant proposal, interview guide, codebook, query summary, and theme development.

Results: Of 17 participants (Table 1), 16 reported having a medical home during the interview. However, only one participant was categorized as having a medical home using the National Survey of Child Health medical home identifying questions. Four key themes emerged identifying critical components of a Medical Home for CMC as identified by caregivers (Table 2): 1. Comprehensive whole child care, 2. Providers must be willing to learn about child, family, and child’s medical conditions, 3. Providers reduce burden on families through advocacy, and 4. Bi-directional trusting relationships between providers and caregivers. Participants emphasized the core components must synergize in order for a provider or clinic to be considered a medical home. Families reported that, in combination, these components help develop a safe space that reduces the burden on families and improves outcomes (i.e., reduces excess health service use, reduces morbidity and mortality, and improves quality of life for child and family).

Conclusion(s): Medical homes are a desired model of care for CMC, but require unique components that are not highlighted by current models.

Table 1. Self-reported demographics of study participants and medical home status


Table 2. Thematic quotations from interviews with caregivers of children with medical complexity