Abstract
Background: Individuals with sickle cell disease (SCD) often have socioeconomic barriers, limiting access to obtain care to manage their condition. Transportation barriers among individuals with SCD can significantly limit access to care and lead to worse health outcomes. Medicaid's Non-emergency Medical Transportation (NEMT) benefit is designed to address these gaps, however, little is known about its real-world effectiveness and the lived experiences of those with SCD who use it in Wisconsin. We sought to use a mixed-methods approach to describe transportation challenges among individuals with SCD and explore patient and caregiver perspectives on NEMT services to inform future interventions.
Methods: Individuals with SCD or their caregivers were requested to complete a transportation needs assessment survey during their outpatient visits with their SCD providers. We assessed transportation challenges using 2 questions: 1) Did you miss appointments or were unable to obtain needed care due to transportation challenges (yes or no); 2) How difficult was it to get to the health care center (reported on a scale of 1 – 10, with 1 being not difficult at all and 10 being extremely difficult). Responses reported ≥5 were considered 'Difficult to access healthcare center’. We investigated if these responses varied by age group (Pediatric <19 years; Adults ≥ 19 years), sex, or area deprivation index (ADI). We also assessed awareness and use of NEMT services based upon these same characteristics. A purposeful subsample of Medicaid beneficiaries who completed the survey was invited to participate in a semi-structured interview to further explore awareness, perceptions, and lived experiences of NEMT. Interview transcripts underwent inductive thematic analysis, with each transcript coded by 2-3 research team members.
Results: Our study includes 152 individuals with SCD or their caregivers who completed the survey. Median age was 14.6 (IQR = 8.0 – 29.7) years, 46.5% were Male, 96% were Black or African American, 83% had Hemoglobin SS/Sβ0disease and 72.4% had Medicaid. Overall, 45% of participants reported that they had missed appointments or were unable to get the recommended care in the past year due to transportation challenges. Data show 33.5% of participants reported it to be difficult to get to the health care center; this did not vary by age group, sex or ADI. A significantly higher proportion of those with difficulty getting to their healthcare center reported missing appointments or that they were unable to obtain needed care due to transportation challenges (70.6% vs 32.7%, p<0.0001). Among the 106 people enrolled in Medicaid with available responses, 64.2% were aware of the NEMT. Of those aware only 50.8% used NEMT. While awareness did not differ by age group, sex or ADI, a significantly higher proportion of adult Medicaid beneficiaries used NEMT compared to pediatric beneficiaries (40% vs 24.7%, p = 0.0085).
We conducted 11 interviews, and our initial coding process revealed three key themes. First, participants shared mixed experiences and perceptions regarding NEMT. Some appreciated the reliability and professionalism of NEMT services; others reported negative experiences, leading to discontinuation of NEMT use. Second, participants described a range of barriers to NEMT use including long wait times for rides and unclear communication and updates about the ride status. Many also noted gaps during transitions from pediatric to adult healthcare system and a lack of system flexibility to accommodate urgent needs. Third, participants developed various navigation strategies to manage transportation barriers. These included relying on personal vehicles, support from family or community networks, utilizing alternative (non-Medicaid) transportation services, and exercising self-advocacy to seek solutions or information.
Conclusions: Many individuals with SCD face transportation challenges and are thus unable to obtain the needed care to manage their condition. Adults are more likely to use transportation services available via Medicaid. Information and updates about NEMT supported by community education may enhance awareness and utilization. Our study is limited to those receiving care at SCD specialty centers, thus results may underestimate transportation challenges and overestimate NEMT use. These findings can guide future initiatives to improve the Medicaid NEMT benefit for people with SCD.
