Getting to the bottom of why children with Spina Bifida use the Emergency Department: Parent and stakeholder perspectives
Teresa L. Russell, MS, Laura Tiusaba, MD, Jacob C. Smith, MD, Rachel Alexander, BS, Qene Mahlet, BS, Christina P. Ho, MD, Hans G. Pohl, MD, Briony K. Varda, MD, MPH.
Children's National Hospital, Washington, DC, USA.
BACKGROUND: Children with Spina Bifida (SB) have a high degree of lifetime healthcare utilization, including Emergency Department use (EDU). To develop strategies to reduce this unplanned healthcare utilization, we aimed to elicit reasons for EDU using qualitative analysis of interviews with both caregivers and stakeholders. METHODS: A cohort of children with SB routinely follow at our institution between 2016 - 2020 was identified and patient and clinical characteristics abstracted through billing data and chart review. Purposeful sampling by age category (0 - 4, 5-11, and >11 years) and degree of past EDU (0-10 vs. >10 lifetime visits) was performed. Patients were recruited by phone and in clinic; interviews were then conducted virtually. An interview guide was developed and revised after the first two interviews. We performed semi-structured interviews with parents of children with SB and key stakeholders (a case manager, two social workers, a Pediatrician, an ED physician, an SB nurse practitioner, and an SB nurse). Spanish-language interviews were conducted by a native Spanish-speaker and transcripts were professionally translated for coding. A qualitative framework approach was used for analysis: 1) the team performed open coding and developed a codebook of emerging themes, then 2) independent closed coding was performed using Dedoose™ and inter-rater reliability (IRR) of code application assessed, then 3) a final interpretation of coding reports was performed assessing convergence, divergence, and variation in themes across patients and stakeholders. RESULTS: 16 families (4 Spanish-speaking) and 7 stakeholders were interviewed. Sampling yielded a heterogenous cohort for both EDU (56% with 0 - 10 visits, 44% with >10) and age (25% 0-4, 44% 5-11, 31% >11 years). IRR was very good (κ = 0.9). Several themes were identified surrounding reasons for ED use: 1) desire for a "one-stop-shop" experience, 2) an acute medical problem clearly requiring emergency care, 3) providers' instructions, 4) influence from a negative past healthcare experience, 5) intrinsic caregiver moderators, and 6) temporospatial influences. Emergent medical problems, "one-stop-shop", and intrinsic moderators were the predominant themes. Urinary tract infections and concern for shunt malfunction were the most frequently mentioned clinical concerns. The caregivers emphasized issues related to delays in outpatient care and lack of adequate SB care in the community, while stakeholders diverged from this with more emphasis placed on non-adherence to care plans.
CONCLUSIONS: For both stakeholders and caregivers, the ED represented a valued form of immediate coordinated care in the context of limited timely outpatient care coordination. Caregivers felt that intrinsic factors were important moderators of the decision to use the ED. Although stakeholders emphasized care compliance as a driving factor, this was not specifically described by caregivers.
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