This US study into the care barriers faced by patients in vulnerable communities interviewed 86 adults with type 1 diabetes who had either been hospitalised for diabetic ketoacidosis in the previous year or had not attended two or more endocrinology visits despite having an HbA1c >75 mmol/mol (9.0%). Between Spring 2018 and Autumn 2019, the participants attended one of 16 hour-long, semi-structured focus groups.
Participants were recruited from Florida and California, two states with different social demographics and healthcare funding systems (California has expanded Medicaid coverage while Florida does not). Overall, 50% of participants had a total household income of <$35000 per year, compared with a background rate of 38% in the US as a whole. Overall technology use was lower in Florida than in California, with 38% versus 63% using continuous glucose monitoring (CGM) and 43% versus 69% using insulin pumps. In Florida, 38% had seen an endocrinologist one or zero times in the last year, and in California this proportion was even higher, at 74%.
Thematic analysis of the interviews revealed a number of barriers to technology use and endocrinology care. In addition to financial/insurance-based constraints, individual-level barriers included difficulty wearing CGM or pumps in jobs that involved manual labour or a lot of sweating. However, the most common barriers were at the healthcare provider (HCP) level, including being overtly blocked or discouraged from using the technology, for example because of poor glycaemic control or an implication that they would find the technology too difficult to use.
HCP-level barriers were also the most commonly cited barriers to accessing endocrinology care. Participants cited a stark contrast between their warm and highly engaged paediatric teams and their care as adults, in which they felt demeaned, belittled and misunderstood. Many did not see value in visiting the adult endocrinologists as a mechanism to improve their overall health and so simply stopped attending, while others cited frustrations with protocols and scheduling that did not accommodate working-class communities, as well as transport concerns. Participants in Florida, but not California, described being “kicked out” of the clinics for failing to attend, even if this was for reasons such as being in hospital at the time.
The authors conclude that, in addition to system- and individual-level changes to improve diabetes management in underserved communities, there is also a critical need for provider-level interventions focused on reducing implicit biases and improving the experiences of people with type 1 diabetes in clinical encounters.
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