Developing a Care Delivery Framework for Older Adults with Chronic Vision Loss: A Mixed Methods Study on Patient Perspectives

From the 2021 HVPAA National Conference

Fahd Naufal (Wilmer Eye Institute, Johns Hopkins University School of Medicine), Xinxing Guo, Judith Goldstein

Background

The ageing population with chronic vision loss (VL) is growing yet the unique healthcare needs of this group is not well-understood and may not be adequately met.

Objective

To understand the patient perspective of older adults with chronic VL to develop a framework that integrates eye and supportive health care services.

Methods

This is an observational mixed-methods study using a quantitative questionnaire and qualitative interview. We recruited individuals 60 years of age and older from the glaucoma, retina and neuro-ophthalmology subspecialities at three clinical sites. Eligible participants were identified through an electronic health record-based query using age and ICD-10 diagnostic code criteria. Inclusion criteria required that participants experienced some difficulty performing everyday activities (functional deficits) such as reading, driving, or recognizing faces with their best corrected vision. The interview covered major themes such as change in vision and condition; loss of functional ability; emotional health and healthcare delivery. Quantitative and qualitative data were managed using REDCap and Atlas.ti. Descriptive analyses and associations were assessed using STATA.

Results

Participants (N=65; mean age of 73 years; 70% female) had a median visual acuity (VA) of 20/30 (range 20/12 to 20/2000) in the better eye. The greatest proportion of participants were diagnosed with chronic eye disease (41.5%) and experienced functional deficits (53.8%) within the last 1 to 5 years. Participants reporting VL in both eyes (60%) were more likely to report a longer duration of functional deficits (non-parametric test of trend, p=0.03). Approximately half (53.8%) of participants reported anxiety or depression due to VL and 70.8% reported requiring additional assistance with performing everyday activities. However, worse VA nor level of binocularity were not associated with emotional health concerns or reliance on others for additional support in performing daily activities. Self-reported anxiety or depression due to VL was significantly associated with reliance on others (χ² test, p=0.03). Worse VA was associated with self-reported reading difficulty (non-parametric test of trend, p=0.02) but not driving, facial/object recognition or walking/balance issues. General perspectives revealed a tendency for participants to normalize chronic eye disease, vision loss and functional loss as an expected outcome of ageing or family history. Despite a large proportion reporting anxiety or depression, less than one-third identified a need for additional education, support groups or transportation. Half (50.8%) reported that their eyecare provider adequately inquired about emotional status.

Conclusions

A framework for older adults with chronic eye disease and on average mild VL should include identifying functional and emotional health concerns in those affected in the context of considering current support systems, in addition to providing ocular health care. Managing emotional health concerns will likely require a targeted approach that goes beyond traditional education and support group interventions.

Clinical Implications

Although most older adults with vision-related functional loss coupled with emotional health concerns and need for additional support may benefit from the integration of care, a minority of patients appear interested in educational and support services. Given the time constraints in ophthalmology care settings, low vision rehabilitation services may offer the detailed assessment needed to direct individualized supportive care.