Publication
Challenges primary care providers face when caring for children with medical complexity
Savolt T, Smith T, Goodwin E, Kennedy M · Developmental Medicine and Child Neurology · 2019
Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study aims to identify the perceived barriers that pose challenges for primary care providers (PCPs) when caring for CMC in Kansas (KS) and Missouri (MO). Study Design: Cross-sectional study. Study Participants and Settings: A survey was disseminated to PCPs in MO and KS through Children's Mercy Hospital, The University of Kansas Hospital, the Office of Rural Health Education, and the MO and KS chapters of the American Academy of Pediatrics. The voluntary-response sample included 115 PCPs. CMC clinic providers were excluded. Material(s) and Method(s): A onetime cross-sectional REDCap survey adapted from previously published surveys was disseminated via email. The data collected were self-identified and categorical. Statistical analysis was performed using a twotailed ANOVA with a p value of 0.05. Result(s): The top barrier to providing care for CMC was insufficient time in clinic (20%) while lack of understanding billing was perceived as not at all a barrier (38%). PCPs were least prepared to handle tracheostomy problems (39%). Access to comprehensive care plans (27%), more time in clinic (21%), and education offerings with continuing education credit (18%) were rated as most helpful to improve ability to care for CMC. Lack of support services was a significant barrier for non-residents compared to residents (45.6% vs. 14.3%, p<0.01) and for PCPs in rural areas compared to providers in metropolitan settings (64.3% vs 29.2%, p=0.015). Metropolitan providers identified insufficient time in clinic to care for patient's needs to be a significant barrier compared to providers in rural areas (65.2% vs 15.4%, p=0.0014). Residents reported they were significantly less prepared to transition a patient from adolescent to adult care (91.7% vs. 48.5%), provide routine healthcare (58.3% vs. 12.3%) and write home health orders (97.2% vs. 59.7%) compared to non-residents (p<0.001). Metropolitan providers felt unprepared to provide palliative care to patients compared to providers in rural areas (86.4% vs 35.7%, p=0.0001). Residents and metropolitan providers both ranked simulation as a more helpful education modality compared with non-residents and rural providers (p<0.05). Conclusions or Significance: Perceived barriers, level of preparedness, and preferred education intervention while caring for CMC varied based on training and practice location. These factors must be considered when developing strategies for education and improving care delivery for CMC.
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