The emotional and physical impact of wet age-related macular degeneration: findings from the wAMD Patient and Caregiver Survey

Abstract

Objectives: This was a cross-sectional survey to evaluate the physical and emotional impact of wet age-related macular degeneration (wAMD) on a global cohort of patients who were receiving (or had previously received) antivascular endothelial growth factor injections, and caregivers (paid and unpaid).

Methods: The survey was performed in nine countries using an ophthalmologist-devised questionnaire.

Results: A total of 910 patients and 890 caregivers completed the questionnaire. Most patients had been diagnosed and receiving antivascular endothelial growth factor injections for more than 1 year (74.7% and 63.8%, respectively), and many patients (82.1%) received support from a caregiver (usually a child/grandchild [47.3%] or partner [23.3%]). wAMD had a negative impact on most patients (71.6%); many rated fear (44.9%), sadness (39.9%), frustration (37.3%), and depression (34.0%) as common. It was linked to physical consequences, such as difficulty in reading (61.1%). Many effects were significantly greater in patients with a longer duration of disease or with wAMD in both eyes. Some caregivers (unpaid) also reported that caregiving had a negative impact on them (31.1%); many reported emotions such as sadness (34.9%) and depression (24.4%), but many also felt useful (48.4%). Overall, 27.2% of caregivers (unpaid) rated caregiving as inconvenient; this was linked to days of employment/personal obligations missed.

Conclusion: wAMD has a significant negative impact on the lives of patients, including vision-related depression, poor mobility, and limitations in day-to-day activities. The impact on nonprofessional caregivers may be underestimated in terms of emotional impact (such as depression) and loss of productivity.

Keywords: anti-vascular endothelial growth factor agents; patient-reported outcomes; wAMD Patient and Caregiver Survey; wet age-related macular degeneration.

Figure 1

The effect of wAMD on patients and caregivers according to (A) overall impact, (B) dependence of patient on caregiver, (C) level of assistance required (patients only), and (D) rating of vision loss. Notes: Questions asked for each effect: (A) What impact has wAMD had on your life (patients, n=910)? To what extent has becoming a caregiver for the patient had a negative or positive impact on your life (unpaid caregivers only, n=832)? (B) Overall, how dependent are you on someone caring for you since your diagnosis on a scale of 1–5, where 1 is not at all dependent and 5 is extremely dependent (patients who have help with daily tasks, n=747)? Overall, how dependent is the patient since their diagnosis on a scale of 1–5, where 1 is not at all dependent and 5 is extremely dependent (caregivers, n=890)? (C) How often do you have a caregiver assist you (patients who have help with daily tasks, n=747)? (D) Currently, how would you rate your vision (patients, n=910)? Currently, how would you rate the patient’s vision (caregivers, n=890)? Abbreviation: wAMD, wet age-related macular degeneration.

Figure 2

The emotional impact of wAMD on (A) patients and (B) caregivers (unpaid). Notes: Data are presented as global and in subgroups according to time since diagnosis. *P<0.05 vs ≤1 year. Questions asked for each effect: (A) What feelings have you experienced since your diagnosis with wAMD (patients)? (B) What feelings have you experienced since you started to help and support the patient (unpaid caregivers only)? Data not available for all patients/caregivers based on disease duration categories. Abbreviation: wAMD, wet age-related macular degeneration.

Figure 3

The physical impact of wAMD on patients based on (A) limitations in daily activities and (B) symptoms. Notes: Data are presented as global and in subgroups according to time since diagnosis. *P<0.05 vs ≤1 year. Questions asked for each effect: (A) Since being diagnosed with wAMD which of the following statements apply to you (patients)? (B) What kind of problems do you currently experience or have previously experienced with your vision (patients)? Data not available for all patients based on disease duration categories. Abbreviation: wAMD, wet age-related macular degeneration.

Figure 4

The physical impact of wAMD on caregivers based on (A) the role of the caregiver and (B) convenience of patient’s current treatment according to the number of employment days/personal obligations the caregiver has missed. Notes: Questions asked for each effect: (A) In what ways does the caregiver help you (patients who have help with daily tasks, n=747)? In what ways do you help the patients (caregivers, n=890)? (B) Based on the following questions: Approximately how many days of employment or personal obligations have you had to miss over the last 12 months because you were helping the patient in some way (unpaid, employed caregivers only, n=659)? To what extent do you find the patient’s current treatment an inconvenience (caregivers, n=890)? Treatment includes traveling to and from appointments and helping the patients to manage their condition (physically and emotionally). Abbreviations: HCP, health care professional; wAMD, wet age-related macular degeneration.