For IRD Patients, Tailored Interventions Address Impaired Vision and Related Distress

Inherited retinal diseases (IRDs) are a group of rare retinal diseases that damage the light-sensitive cells in the retina, causing progressive vision loss.

Different IRDs result in different low vision (LV) challenges. LV refers to vision problems that cannot be fully resolved with corrective lenses, medical or surgical therapies. Depending on their diagnosis, IRD patients may experience worsening central vision or peripheral vision, color blindness, night blindness, light sensitivity, blurred vision, or difficulty seeing details.

Retina specialist K. Thiran Jayasundera, M.D., M.S., is dedicated to improving vision outcomes for IRD patients. In clinical practice, he often refers patients to Kellogg’s Low Vision and Visual Rehabilitation Service. The service provides comprehensive low vision rehabilitation (LVR) tailored to individual patients’ needs, combining technologies, devices, environmental modifications and skills training to help maximize their remaining vision and maintain independence in daily living.

Dr. Jayasundera’s latest research project focuses on the mental health of IRD patients. The two-part project is funded by an NIH R01 grant.

“Understandably, many patients coping with worsening vision also struggle with anxiety and depression,” he explains. “There’s a vicious cycle of vision loss and mental distress. Distress tends to increase as vision decreases, and the more patients struggle with emotional issues, the less likely they are to fully benefit from LVR.”

The first objective of the project is to study the interplay between functional vision impairments and emotional distress in patients with IRDs. Participants will undergo functional vision testing and general depression screening. They, will also complete two surveys designed specifically for IRD patients to self-report their vision disabilities, anxiety and depression. Both surveys were developed and validated by Dr. Jayasundera.

The project’s second component is a clinical trial of a therapeutic intervention. Participants will receive a targeted combination of LVR and psychotherapy using a template technique called emotion regulation therapy (ERT). ERT integrates components of cognitive-behavioral, acceptance, dialectical, mindfulness and experiential therapies. Developed by David Fresco, Ph.D., Co-Investigator on the R01, ERT has been proven effective in reducing anxiety and depression by addressing the underlying factors that worsen distress.

“Based on the IRD diagnosis, we know how to individualize a patient’s LVR,” he explains. “This study adds a component of psychotherapy, also individualized to patients’ reported symptoms. We hypothesize that when combining tailored psychotherapy with tailored vision rehabilitation, each will bolster the other. With relief from their anxiety and depression symptoms, patients will be better able to comply withparticipate in rehabilitation, and achieve the best possible vision results.”

If shown effective in this clinical trial, this approach could be adapted for other vision-related conditions that evoke distress.

Header image caption: K. Thiran Jayasundera, MD, MS