The New England Journal of Medicine recently published a paper entitled “Frequency of Evidence-Based Screening for Retinopathy in Type I Diabetes” by the DCCT/EDIC Research Group, funded by the NIH. The authors of the study used retinal photographs and other data from a cohort of patients followed for over 30 years in the DCCT/EDIC studies. Robust data sets like these are important to population health as they draw from large numbers of people representative of specfically targeted patient populations. However, one of the pitfalls remaining throughout the literature relative to eye and vision-related research involves the use of language that does not accurately reflect clinically relevant terminology and/or definitions representative of all stakeholders in health care. I’m proud to say that language I wrote – to ensure this issue was highlighted and reflected in our committee’s national report – was included and published by the National Academies of Science, Engineering, and Medicine (NASEM) in 2016. (N.B. As an example, since first addressing in one of my early articles that no universally accepted definition of the term “low vision” exists, there is now well-established clinical and consensus language regarding the term “chronic vision impairment” and standardized eye and vision care definitions for clinicians and researchers within the NASEM report).
In the case of this study publication, the authors clearly identify early in the manuscript the goal of ‘retinopathy screening’ as “timely detection of retinopathy that would, without intervention, cause vision loss.” To us in eye care (and to many other professional stakeholders), this definition of ‘screening’ equates to what we and our patients know as an eye examination – a visit with the doctor to determine the health state of the patient according to risk/presenting factors, evidence-based best practices, and needed treatment/intervention based on effective shared clinical decision making that incorporates patient preferences. However, the authors fail to similarly define what they mean by the term ‘screening’ in a way that is clear to stakeholders – many of which lie outside the house of medicine – who are targeted audiences of this information.
In working through the manuscript, the authors eventually do connect the term ‘screening’ with their terminology as “the opportunity to formulate rationale for data-driven strategies to screen for retinopathy” provided by “nearly complete follow-up with strong adherence to the fundus photography schedule and systematic assessment of risk factors for retinopathy”. At issue is how various audiences interpret this language, along with the use of term ‘screening’, and with an understanding of potential cost implications. In this instance, the authors goal was to establish an individualized “fundus photography screening schedule” that would detect vision-threatening changes. Using a Markov model (a well-accepted method for clinical cost analysis decision-making and one that I’ve employed in my work), the authors assessed effects on cost on the basis of two factors: the patient’s retinopathy status, and mean glycated hemoglobin (HBA1c). And while the authors were justified in their choices – A1c level and retinal status are important risk factors for progressive vision loss as outlined in our AOA EBO Committee’s AOA Evdence-Based Clinical Practice Guideline Eye Care of the Patient with Diabetes Mellitus – they are by no means the only factors involved in shared clinical decision making, patient counseling, and integrated team care considerations for patients with diabetes and related eye/vision/retinal changes. This is at the crux of where the highly focused message from this paper runs the risk of being misconstrued. While those of us who study health care delivery also recognize that costs are important, even the NAM recently argued that “…there is a profound need for a coherent strategy combining efforts in health care and public health and greatly expanding prevention, screening, care, research, and public education…whatever this effort costs, the price of inaction is likely to be much higher: a nation afflicted with devastating prevalence and the human, social, and economic costs of diabetes, the great bulk of which are preventable.” All in all, there appears to be a need for further clarity in how the resulting ‘personalized screening approach’ that, according to the authors’ findings could be years inbetween evaluations, meshes with these many other factors.
Thanks go to our AOA for advocacy in reaching out for additional support and calling on NIH to focus on greater responsibility when messaging (see below from AOA First Look 4-21-2017). And lastly, what is our take-home message? I would suggest that when coming across a headline like “Fewer exams and better eye health? Aye-aye, finds type 1 diabetes study”, remember this: Words Matter. Words in evidence and outreach and research matter. Words in messaging matter. Not only to our patients in accessing proper care, but to the overall health of the public. And by calling out something that isn’t quite right, we’re meeting our mission of promoting health for the nation.