A Longitudinal Study of Interactions Between Health Professionals and People With Newly Diagnosed Diabetes

By positing that health care professionals focused too acutely on the biomedical discourse of the disease, Dowell et al (1) hint at the lost opportunity to explore the patient's personal model of diabetes (2) and how that can affect self-management and disease progression. We heartily agree with the need for providers to initiate this discussion with patients, but we have reason to believe that the conclusion here may overstate what the study's method could assess. The authors describe that patients were recruited by participating physicians when the diagnosis of diabetes was first discussed. It is unsaid whether the physicians introduced the study before or after giving the diagnosis. Moreover, the method section elucidates that the first data collection was at the initial postdiagnosis consultation.

Our research team is also studying the moment of a diabetes diagnosis. In retrospective surveys and interviews, we discovered two elements of the diagnosis conversation that can create barriers to patient understanding. First, providers often delivered an inexact diagnosis, which caused the patient to question the certainty of the diagnosis. Second, patient distress after hearing the diagnosis blocked the patient from absorbing any additional information. Building upon this, we created an intervention training providers in how to deliver the diabetes diagnosis within a culture-centered framework. To evaluate the effectiveness of this intervention, over the past six months, we have attempted to identify the "newly diagnosed."

Using both electronic health record review and provider reporting, we have encountered obstacles to identifying patients who are receiving an initial diagnosis. In our system's electronic health record, in use since 2005, we find that searches are limited by both inaccurate ICD coding and the variety of practice settings in which diabetes can be identified. We have contacted patients for recruitment who believe they do not have diabetes although their records state otherwise. We hypothesize that either providers did not present the diagnosis or patients did not understand it. Health records also revealed patients whose only ICD codes that indicate a diabetes diagnosis are documented by the emergency department or inpatient service. Additionally, providers have shared names of patients to whom they had presented a new diagnosis but, after a complete health record review, we discovered the diagnosis had been documented several years earlier. Each of these obstacles underscores the need for more research into the moment of diagnosis.

These challenges paired with our research process evaluation have prompted us to create a model of "shared diagnosis." Researchers, including ourselves, need to better conceptualize what constitutes a new diagnosis. Is it a diagnosis when a clinician notes an out-of-bounds lab value in the record? Is it a diagnosis when a hospitalist mentions diabetes in passing at discharge? Is it a diagnosis when a primary care provider codes the chart with the ICD-10 code E11.9? Is it a diagnosis when a provider tells a patient "your lab values were high; that can be an indicator of diabetes"? Or is it not a complete diagnosis until the patient absorbs the information? Without a shared understanding of diagnosis, the patient and provider cannot work together to address the disease.

Just as shared decision making requires the patient and provider to fully engage in clinical conversations to make clinical decisions, we posit that the patient and provider must fully engage in a clinical conversation about the diagnosis. We propose that the diagnosis-delivery process should align with the speech communication model (3), and, in the least, include a four-step process. First, the provider intellectually recognizes the data as evidence of the disease. Second, the provider gives (encodes and transmits) that information to the patients. Third, the patient hears (receives and decodes) the information accurately. Fourth, the patient accepts it as new, self-relevant knowledge.

Dowell et al's study demonstrates that some patients grapple with a diagnosis for six months or more. One of our most revealing interviews is with a patient who contrasted the certainty of being told she was pregnant to the uncertainty in a diabetes discussion. "You're pregnant. Whether you're two months or eight months, you still know pregnant is pregnant...looking at diabetes is not that way. I don't know if it is or not, you know? Being a 6.4, and somebody 10.4 or whatever, I mean... I don't know..." Patients like her are unlikely to engage the health care system efficiently or to initiate self-management behaviors until they share an understanding of the diagnosis with their primary care providers.

References
1. Dowell A, Stubbe M, Macdonald L, Tester R, Gray L, Vernall S, et al. A Longitudinal Study of Interactions Between Health Professionals and People With Newly Diagnosed Diabetes. Ann Fam Med. 2018;16(1):37-44.
2. Lawson VL, Bundy C, Harvey JN. The development of personal models of diabetes in the first 2 years after diagnosis: a prospective longitudinal study. Diabetic Medicine: A Journal of the British Diabetic Association. 2008;25(4):482-90.
3. Gerbner G. Toward a General Model of Communication. Audio-Visual Communication Review. 1956;4(3):171-99.

Disclaimer: The views expressed within this publication represent those of the authors and do not reflect the official position of the U.S. Air Force, U.S. Army, Uniformed Services University, Department of Defense, or the U.S. Government.

Competing interests: None declared