Patient-, Caregiver-, and Eye Care Professional-reported Burden of Geographic Atrophy Secondary to Age-related Macular Degeneration

INTRODUCTION

Geographic atrophy (GA) is a progressive and irreversible advanced form of age-related macular degeneration (AMD),^[1] with no current US Food and Drug Administration-approved treatment. GA affects >5 million individuals worldwide,^[2] including >1 million in the United States,^[3] indicating that GA is as common as neovascular AMD.^[3] The prevalence of GA increases exponentially with age, from 4% at 80 years to ~15% at 90 years.^[4] GA has a devastating effect on health-related quality of life (HRQOL) and on patients’ ability to read, drive, and perform other day-to-day activities,^[5-7] leading to frustration, annoyance, and even clinical depression.^[8]

Previous studies have shown that ophthalmic conditions, particularly those causing loss of visual function, can deprive patients of independence and increase caregiver burden.^[5,9] Patients new to low-vision rehabilitation express difficulty with reading, driving, using vision aids, mobility, in-home activities, lighting and glare, facial recognition, and social interactions.^[5] In a multicountry observational study of neovascular AMD,^[10] >20% of patients were prescribed vision aids, and 19–41% required assistance with daily activities.

Previously, we performed a comprehensive literature review (Singh et al. presented at the American Society of Retina Specialists Annual Meeting, August 9–14, 2016) to identify knowledge gaps and instruments regarding the patient-reported and socioeconomic burden of GA. The review identified the dimensions of HRQOL relevant to patients with GA or instruments used to assess them, in addition to information related to caregivers of patients with GA. The results of this literature review are currently in preparation for publication.

In the present study, we sought to know more about issues concerning patients with GA, their caregivers, and eye care professionals, directly from these individuals. We carried out a qualitative study to better understand the burden of illness of GA from patient, caregiver, and eye care professional perspectives.

METHODS

RESULTS

Table 1 provides baseline participant characteristics for the eight patients with GA, six caregivers, and five eye care professionals interviewed. Figure 1 includes quotes from patients and caregivers. Supplementary Table 4 provides aggregated data from interviews with all participants. No participants withdrew from the study after providing consent.

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Figure 1: Mentioned topics with quotes from patients (gray boxes) and caregivers (white boxes). n = 8 patients; n = 6 caregivers.

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Patient perspective

Impact on daily activities and HRQOL

Figure 2 summarizes findings from patients, distinguishing spontaneous topics (i.e., sports and hobbies, household chores and activities, and personal hygiene) from those covered by the interview guide (reading, transportation and driving, and everyday activities). Spontaneous topics were not identified in previously published studies of patients with AMD or GA. The topics mentioned most frequently were driving, reading, and psychological issues. One-fourth of respondents specifically mentioned curtailing long-distance trips, 63% of respondents reported difficulty reading for everyday tasks or leisure, and 38% of respondents felt helpless or embarrassed that they required assistance. In addition, all respondents reported that they still performed household chores, even though they sometimes took longer to complete.

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Figure 2: Burden of illness of geographic atrophy: Patient perspective.

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Costs and burden of illness

The frequency of direct medical resource use associated with GA, including visits, procedures, and tests, had not changed for patients since diagnosis. All reported purchasing Age-Related Eye Disease Study-recommended vitamins out of pocket. Vision aids ranged from a flashlight (reported by all respondents) to a talking watch and magnifying system. No vision aids were covered by insurance, except for a patient with Veterans’ Administration coverage. All patients were retired, except for one working on his family farm; 38% of patients reported having previously modified their work schedules as a result of their vision challenges. Half of respondents were unaware of visual rehabilitation training. Patients did not identify injuries or accidents associated with GA.

DISCUSSION

GA is a leading cause of irreversible vision loss in the developed world,^[11] yet limited information is available about the burden of GA on patients and their caregivers. A comprehensive literature review that we conducted to identify knowledge gaps on the socioeconomic burden of GA^[11] is currently in preparation for publication. This literature search provided guidance for developing the semi-structured interview guides.

Patient interviews confirmed that many areas noted as relevant to AMD in the literature^[12] are similarly relevant to GA. Interviews also identified new areas, such as sports and outdoor activities, religious participation, and personal hygiene. Caregivers confirmed concerns raised by patients, describing the influence of GA on their own schedules and activities, and providing additional input about injuries. Eye care professionals recognized the burden of GA on patients’ mental health and acknowledged the distinction between availability of vision aids and sufficient training and reinforcement for optimal benefit.

As there are many knowledge gaps regarding the burden of GA, these interviews provide a valuable glimpse into the important concerns facing patients and caregivers, despite the limitation of a small sample size. Using a semi-structured interview approach encouraged respondents to raise issues rather than limiting responses to a pre-specified set, thereby allowing identification of topics previously unmentioned in the literature.

This study did not include capture of visual acuity data either by prospective assessment or chart review, which would have provided clinical context to the survey findings. Nevertheless, this pilot study provides the basis to design a more substantive and systematic survey in patients with GA to explore further the issues mentioned in these interviews. Additional topics for future research include direct medical resource use, impact on caregiver well-being, indirect costs, and differences between patients with GA and patients with normal vision.

CONCLUSIONS

In conclusion, this qualitative study provided valuable insights into the extensive burden of GA secondary to AMD on patients, caregivers, and eye care professionals. It also highlighted the need for more studies to further characterize the burden of this progressive and irreversible disease.