Diabetic Retinopathy and the Cascade into Vision Loss

ABSTRACT

Vision loss from diabetic retinopathy should be unnecessary for patients with access to diabetic retinopathy screening, yet it still occurs at high rates and in varied contexts. Precisely because vision loss is only one of many late-stage complications of diabetes, interfering with the management of diabetes and making self-care more difficult, Vision Threatening Diabetic Retinopathy (VTDR) is considered a “high stakes” diagnosis. Our mixed-methods research addressed the contexts of care and treatment seeking in a sample of people with VTDR using safety-net clinic services and eye specialist referrals. We point to conceptual weaknesses in the single disease framework of health care by diagnosis, and we use the framework of “cascades” to clarify why and how certain non-clinical factors come to bear on long-term experiences of complex chronic diseases.

Video abstract

Read the transcript

Watch the video on Vimeo

KEYWORDS:

• Cascading morbidities
• diabetic retinopathy
• follow-up referrals
• United States
• vision loss

Acknowledgments

Support in this research was provided by Jennifer See, OD (EyePACS); Kasumi Widner (Google Research); Anna Sorenson (EyePACS); Vivian Ngo (EyePACS); Amanda Joslin (EyePACS); Kelli Bassett (SMU); and Katie Logsdon (SMU). Research design assistance and conversation was also provided by Lily Peng, MD, PhD (Google Research). There has been no prior publication of the study. Approval was obtained from the Riverside University Health System Medical Center Institutional Review Board IRB.

Conflict of interest

The following conflicts of interest are declared: Dr. George Bresnick and Dr. Jorge Cuadros are both part owners of EyePACS LLC.

Notes

^1. We did not ask systematically about citizenship or legal residency, so we cannot speak clearly to the ways that migration, residency status, or other citizenship factors affect our results. But when these factors arose naturally in interviews, we recognized their clear relationship to access and have noted them for the reader.

^2. http://www.chcf.org/publications/2009/03/californias-safetynet-clinics-a-primer.

Additional information

Funding

Funding support came from Google Research and EyePACS, LLC.

Notes on contributors

Carolyn Smith-Morris

Carolyn Smith-Morris, PhD, MS, LPC is associate professor in the department of Anthropology at Southern Methodist University. Her research addresses chronic disease, especially diabetes, among Mexican migrants in the US and Mexico, and among Native Americans.

George H. Bresnick, MD, MPA is a public health ophthalmologist with many years’ experience addressing the diabetic retinopathy challenge. He is the Chief Medical officer of EyePACS, LLC, a comprehensive telemedicine company dedicated to preventing unnecessary vision loss in populations worldwide.

Jorge Cuadros, OD, PhD (medical information science) has been practicing telemedicine-based eye care continuously since 1994. He developed EyePACS in 2003 and is currently president and CEO of EyePACS LLC, as well as clinical professor of optometry at the University of California, Berkeley.

Kathryn E. Bouskill, PhD, MPH is an associate social scientist at the RAND Corporation. She has a background in medical anthropology and social epidemiology. Her research evaluates how novel technologies are shaping the landscape of public health, particularly in regard to chronic and non-communicable diseases and mental health.

Elin Rønby Pedersen, PhD is a research scientist in Google Inc. where she leads research in the Human Side of Deep Learning in Health. She has a PhD in Computer Science; over the years she has successfully integrated studies of people into design and prototyping of new technology.