Current barriers to treatment for wet age-related macular degeneration (wAMD): findings from the wAMD patient and caregiver survey

Figures & data

Table 1 Diagnosis of wet age-related macular degeneration from a patient perspective

Question	All patients (N=910), n (%)	wAMD (two eyes) (n=410), n (%)	wAMD (one eye) (n=500), n (%)
How long have you been diagnosed with wAMD?
≤1 year	230 (25.3)	85 (20.7)	145 (29.0)*
>1 to <3 years	420 (46.2)	199 (48.5)	221 (44.2)
≥3 to <6 years	203 (22.3)	95 (23.2)	108 (21.6)
≥6 years	57 (6.3)	31 (7.6)	26 (5.2)
How long after you first noticed a change in your vision did you first visit an HCP?
≤1 week	208 (22.9)	87 (21.2)	121 (24.2)
>1 week to ≤1 month	455 (50.0)	221 (53.9)	234 (46.8)
>1 to ≤3 months	99 (10.9)	41 (10.0)	58 (11.6)
>3 to ≤6 months	77 (8.5)	32 (7.8)	45 (9.0)
>6 months	46 (5.1)	19 (4.6)	27 (5.4)
Do not know	25 (2.7)	10 (2.4)	15 (3.0)
What was the main reason for this delay in visiting an HCP?a
Thought symptoms would go away	187 (41.2)	101 (48.3)**	86 (35.1)
Not very concerned, assumed it was part of aging process	90 (19.8)	37 (17.7)	53 (21.6)
Unable to get earlier appointment	73 (16.1)	32 (15.3)	41 (16.7)
Frightened about what it might be	35 (7.7)	23 (11.0)**	12 (4.9)
Unaware vision had changed until it was pointed out to me	28 (6.2)	5 (2.4)	23 (9.4)*
Waiting for next scheduled appointment	21 (4.6)	7 (3.3)	14 (5.7)
None of the above	20 (4.4)	4 (1.9)	16 (6.5)*
How long was the time between first HCP visit and diagnosis of wAMD?
First visit	389 (42.7)	172 (42.0)	217 (43.4)
1–3 weeks	275 (30.2)	139 (33.9)**	136 (27.2)
1–2 months	185 (20.3)	80 (19.5)	105 (21.0)
>2 months	47 (5.2)	13 (3.2)	34 (6.8)*
Not sure	14 (1.5)	6 (1.5)	8 (1.6)

Notes:

a If first visit ≥1 month (n=454 [all patients], n=209 [two eyes], and n=245 [one eye]).

* P<0.05, one eye vs two eyes.

** P<0.05, two eyes vs one eye (two-sided test).

Abbreviations: HCP, health care professional; wAMD, wet age-related macular degeneration.

Table 2 Treatment and follow-up of wet age-related macular degeneration from a patient perspective

Patient questions	All patients (N=910), n (%)	wAMD (two eyes) (n=410), n (%)	wAMD (one eye) (n=500), n (%)
How long have you been receiving intravitreal injections?
≤1 year	329 (36.2)	134 (32.7)	195 (39.0)*
>1 year to <3 years	391 (43.0)	187 (45.6)	204 (40.8)
≥3 years to <5 years	147 (16.2)	65 (15.9)	82 (16.4)
≥5 years	43 (4.7)	24 (5.9)	19 (3.8)
Did you receive treatment immediately after being diagnosed?
Yes, HCP recommended immediate treatment	495 (54.4)	254 (62.0)**	241 (48.2)
Yes, HCP scheduled an appointment within 1–3 weeks	332 (36.5)	130 (31.7)	202 (40.4)*
No, HCP recommended to see how condition progressed	57 (6.3)	20 (4.9)	37 (7.4)
No, I was not sure that I wanted treatment and postponed	15 (1.6)	4 (1.0)	11 (2.2)
Others	11 (1.2)	2 (0.5)	9 (1.8)
How often do you visit the HCP for eye check-ups?
Every 4–6 weeks	385 (42.3)	185 (45.1)	200 (40.0)
Every 2 months	264 (29.0)	137 (33.4)**	127 (25.4)
Every 3–5 months	172 (18.9)	66 (16.1)	106 (21.2)
Every 6–12 months	72 (7.9)	19 (4.6)	53 (10.6)*
<1 year	17 (1.9)	3 (0.7)	14 (2.8)*
Do you usually have treatment for wAMD every time you go to the hospital/clinic/or your HCP office regarding wAMD?
Yes	387 (42.5)	227 (55.4)**	160 (32.0)
No	363 (39.9)	131 (32.0)	232 (46.4)*
No, I usually have a check-up and then a separate appointment	160 (17.6)	52 (12.7)	108 (21.6)*
What effect has your current treatment for wAMD had on your vision?
Return to prediagnosis vision/vision still improving	203 (22.3)	92 (22.4)	111 (22.2)
Temporary improvement/stabilization	470 (51.6)	193 (47.1)	277 (55.4)
Vision worsened	214 (23.5)	121 (29.5)	93 (18.6)
Do not know	23 (2.5)	4 (1.0)	19 (3.8)

Notes:

* P<0.05, one eye vs two eyes.

** P<0.05, two eyes vs one eye (two-sided test).

Abbreviations: HCP, health care professional; wAMD, wet age-related macular degeneration.

Figure 1 Association between frequency of health care professional appointments and impact of wet age-related macular degeneration on caregivers (N=890).

Note: Questions asked were: do you find the patient’s treatment an inconvenience? How often does the patient visit the health care professional for check-ups/about their wAMD?
Abbreviation: WAMD, wet age-related macular degeneration.

Table 3 Treatment and follow-up of wet age-related macular degeneration from a caregiver perspective

Caregiver questions	All caregivers (N=890), n (%)
How often do you attend appointments for the patient’s wAMD?
Always	535 (60.1)
≥50%/year	279 (31.3)
<50%/year	60 (6.7)
Never	16 (1.8)
How often do you have to take the patient to the HCP for their wAMD?
Every 4–6 weeks	337 (37.9)
Every 2 months	306 (34.4)
Every 3–5 months	165 (18.5)
Every 6–12 months	65 (7.3)
<1 year	6 (0.7)
Do not know	11 (1.2)
Did the patient ask your opinion about the best treatment plan for him/her?a
Yes	555 (83.3)
No	111 (16.7)
What impact has the patient’s current treatment plan had on his/her vision?
Return to prediagnosis vision/vision still improving	159 (17.9)
Temporary improvement/stabilization	475 (53.4)
Vision worsened	230 (25.8)
Do not know	26 (2.9)
Have you been able to reduce the domestic care provided after treatment?
Yes	269 (30.2)
No, level of care has remained the same	516 (58.0)
No, level of care has increased	105 (11.8)
If vision was worsening, would you encourage patient to speak to the HCP?
Yes	794 (89.2)
No	43 (4.8)
Not sure	53 (6.0)

Note:

a If a range of treatments was offered.

Abbreviations: HCP, health care professional; wAMD, wet age-related macular degeneration.

Table 4 Level of information and support provided based on patient and caregiver perspective

	All patients (N=910), n (%)	All caregivers (N=890), n (%)
Were you informed that wAMD is chronic and needs lifelong treatment?
Yes	779 (85.6)	778 (87.4)
No	131 (14.4)	112 (12.6)
Where do you get the majority of your wAMD information from?
Physician	688 (75.6)	637 (71.6)
Nurse	23 (2.5)	21 (2.4)
Brochure/Ieafets at HCP clinic	25 (2.7)	36 (4.0)
Patient association or advocacy group	35 (3.8)	38 (4.3)
Patient support program	17 (1.9)	22 (2.5)
Friends or family	24 (2.6)	16 (1.8)
Internet	78 (8.6)	100 (11.2)
Newspapers/TV/radio	7 (0.8)	6 (0.7)
Others	5 (0.5)	5 (0.6)
Do not seek information	8 (0.9)	9 (1.0)
Are you enrolled in a patient support program? (patients only)
Yes	209 (23.0)	–
No	701 (77.0)	–
What type of support does the patient support program offer?a
Appointment reminders	151 (72.2)	–
Monetary support	77 (36.8)	–
Emotional support	123 (58.9)	–
Transportation services	78 (37.3)	–
Visual aides	69 (33.0)	–

Note:

a All patients (n=209) enrolled in a patient support program.

Abbreviations: HCP, health care professional; wAMD, wet age-related macular degeneration.

Figure 2 Obstacles to wAMD management and treatment from a patient (N=910) and caregiver (n=890) perspective (A), including (B) reasons for difficulty attending every appointment (patients only).

Note: Questions asked were: what do you think are the top three obstacles to coping with/handling your wAMD? (All patients, n=910). What do you think are the top three obstacles to managing the patient’s wAMD? (All caregivers, n=890). *P<0.05 (one vs two eye[s]); **P<0.05 (two vs one eye[s]).
Abbreviations: wAMD, wet age-related macular degeneration.

Figure 3 association between travel time to health care professional appointments and impact of wet age-related macular degeneration on patients (N=910).

Note: Questions asked were: what impact has wAMD had on your life? approximately how far from the hospital/eye clinic do you live?
Abbreviation: wAMD, wet age-related macular degeneration.