Factors affecting adherence to glaucoma medication: Patient perspective from North India

Abstract

Purpose:

Adherence to glaucoma medical therapy is a key factor in achieving target intraocular pressure to prevent glaucoma progression. To determine factors affecting medication adherence in glaucoma patients in an urban population belonging to poor socioeconomic status.

Methods:

A cross-sectional study was conducted on 200 patients attending glaucoma services in a tertiary referral hospital of North India. Adherence to medication was determined subjectively by questionnaire and objectively by counting the number of used bottles at the end of a month or during refill, whichever was earlier. Patient-related parameters in adherence toward glaucoma medication were studied based on demography, knowledge, attitudes, and practices (KAP). The statistical techniques of bivariate and multivariate logistic regression were adopted to test the objective.

Results:

The population was statistically homogeneous based on gender and income in both groups. A large proportion of patients had bilateral disease (87%) and were on two or more medications (62.5%). Adherence to glaucoma medical therapy was seen in 68% of patients, with knowledge about glaucoma present in 58% of patients. Deterrents to drug adherence were identified as forgetfulness (71%), unavailability of drugs (19%) or funds to purchase the same (26%), polypharmacy (21%), and side effects (5%). Dependence on an escort by 44% and dependence on hospital supply of medications by 60% emerged as the contextual factors requiring scrutiny while prescribing lifelong glaucoma medications. Disease misconceptions (53%) were prevalent and drug instillation practices were unsatisfactory (57%).

Conclusion:

The study offers insight into patients’ perspectives regarding the lifetime use of antiglaucoma medications and focuses on key issues linked to drug nonadherence.

Glaucoma, a chronic, progressive optic neuropathy, is the leading cause of irreversible blindness worldwide, with India contributing to one-fifth of the global burden.[1,2] Intraocular pressure (IOP) remains the only modifiable factor with proven efficacy to reduce disease progression,[3,4,5] requiring lifetime use of antiglaucoma medications. Adherence, persistence, and correct administration[6,7] of antiglaucoma drugs have been identified as key elements for the successful treatment of glaucoma, which affects more than 12 million people in India.[8]

Poor adherence with a 50% rate of discontinuation of medications within the first months of therapy has been noted in many chronic medical conditions.[9] Glaucoma, being an asymptomatic condition[10,11] requiring lifelong instillation of eye drops without any evident visual benefits, is more vulnerable to adherence issues. Identification of nonadherence is critical in the decision to achieve target pressure before switching over, adding drugs, or resorting to surgery, thereby preventing avoidable visual loss.[12,13]

Previous factors identified for poor adherence include disproportionate medical care, difficulty in medicine instillation in aged population,[14,15] poor disease knowledge,[14] systemic comorbidities, recurring cost of drugs, lack of obvious symptoms in the initial stages,[12] situational factors such as forgetfulness and lack of literacy,[15] marital status,[16] and socioeconomic status.[17] Poor adherence rates as high as 50%, occurring over 75% of the time in glaucoma patients, are often contextual, linked to patient’s personality, attitude, social circumstances, peer behavior, and family situation.[12,18] Very few studies[19,20] have explored such contextual factors affecting adherence to glaucoma medications. Herein, we aimed to study such contextual factors and identify those which require modifications in doctor–patient dialog.

Methods

This was a descriptive, cross-sectional, questionnaire-based study conducted in glaucoma services of a tertiary-level eye care hospital in North India. Two hundred adult persons with glaucoma on topical glaucoma medical therapy for a minimum of 6 months were invited to participate in the study starting in December 2018 (sample size was calculated based on a study by Rajurkar et al.[21]). The Rajurkar study reported that noncompliance toward glaucoma medication in North India is 49%, and considering a difference of 10%, at 80% power and 5% level of significance, the required sample size under the two-sided exact test will be 163. With an addition of 10% dropout, the required sample size was calculated as 182.

Patients scheduled for glaucoma filtering surgery, those with systemic comorbidities like Parkinson’s or Alzheimer’s disease, and those with arthritis, which can impair self-administration of eye drops, were excluded from the study.

Demographic parameters like age, gender, educational status, place of residence (distance from the hospital), marital status, family profile, and socioeconomic status including income and occupation were noted. Disease-related parameters like type, severity, duration and laterality of glaucoma, best corrected visual acuity (BCVA), IOP, ocular morbidities like cataracts, pseudophakia, and systemic comorbidities like diabetes, hypertension, and cardiovascular diseases were noted. Severity grading into advanced, moderate, and early glaucoma was done based on disc changes and visual field (VF) indices wherever the latter was possible.

Knowledge, attitude, and practices (KAP) related to glaucoma were assessed using a structured questionnaire [Annexure 1]. The questionnaire was validated in a different set of glaucoma patients using a pilot run.

Knowledge and attitude toward disease were assessed by the patient’s awareness of the asymptomatic nature of the disease, the gravity of missing doses, lifelong need to use eye drops, emotion toward medication, perceived side effects, and preference for surgery versus medication. The knowledge score (scored on Likert scale) with more than the mean score of responses was taken as an indicator for analysis.

Treatment practices like the schedule of glaucoma medicine instillation, skill in drug administration, dependency on a caregiver for drop instillation, modalities of drug procurement, and refill patterns were noted.

Adherence was defined as not missing >1 day drops in past 15 days on subjective assessment. Adherence was assessed both by self-reporting and by direct observation of the number of medication bottles used over a minimum follow-up of 1 month. Post-one month determination of adherence was done, so as to intervene timely in case of nonadherence to prevent progression of glaucoma.

Ethical statement

The study was cleared by the institutional ethical committee and followed the tenets of Declaration of Helsinki. Informed consent was obtained from all participants.

Statistical analysis

The bivariate associations among measures of patients’ perspective regarding hindrance from adherence status about glaucoma medication were assessed using the Chi-square test. Both unadjusted and unadjusted logistic regression models were constructed separately to estimate the probability of adherence and factors influencing it, and bivariate analysis considered for adjusted model was done to estimate the effect of factors such as forgetfulness, side effects, fatigue, opening, reading label, and marking on bottle on adherence. The results obtained from the regression analyses are presented in terms of odds ratios (ORs) with 95% confidence interval (CI). Statistical analyses were performed using the Statistical Analysis System (SAS) package (university edition).

Results

The sociodemographic characteristics, knowledge, and adherence status about glaucoma among the study participants have been represented in Table 1. The mean age of participants was 53.7 ± 14 years, and the majority (44.5%) belonged to the 40–60 years age group and were males (52%). Among the study participants, most were literate (62%) and unemployed (56%). Among those employed or retired, 81.5% had a monthly income around Rs. 6000, and only 7.5% were living alone. Only 58% had a knowledge about glaucoma medications. Nonadherence toward glaucoma medications based on objective evaluation by empty bottle count was seen in 32% of participants. The characteristics of anti glaucoma medication (AGM) observed among the study patients have been summarized in Table 2.

Table 1.

Sociodemographic characteristics, knowledge, and adherence status of the study participants about glaucoma

Variable	Number (%)/mean±SD	P*
Age (Mean±SD) [range]	53.7±14 [19–89 years]	<0.0001
<40 years	40 (20.0)
40–60 years	89 (44.5)
60+ years	71 (35.5)
Gender		0.6714
Female	97 (48)
Male	103 (52)
Marital status		<0.0001
Living spouse	156 (78)
Widowed	34 (17)
Single	10 (5)
Literacy level		0.0007
Illiterate	76 (38)
Literate	124 (62)
Family profile		<0.0001
Caregiver present	185 (92.5)
Lives alone	15 (7.5)
Employment status		<0.0001
Currently employed	52 (26)
Retired	36 (18)
Unemployed	112 (56)
Income range (in rupees)		0.0624
<6000	37 (18.5)
6000–10,000	49 (24.5)
10,000–16,500	64 (32)
>16,500	50 (25)
Knowledge about disease		0.0237
Based on questionnaire
No	84 (42)
Yes	116 (58)
Objective adherence Bottle count as per the requirement		<0.0001
No	64 (32)
Yes	136 (68)

*Chi-square test for equal proportions. SD=Standard deviation

Table 2.

Clinical characteristics of the study participants

Variable	Number (%)/Mean±SD	P*
Bilateral glaucoma	174 (87)	<0.0001
One eyed status	39 (19.5)
Comorbidity ocular		<0.0001
Cataract	11 (5.5)
Pseudophakia	43 (21.5)
Disc status right class		<0.0001
Advanced disease	114 (64.41)
Early disease	24 (13.56)
Moderate disease	39 (22.03)
Disc status left class		<0.0001
Advanced disease	121 (65.41)
Early disease	30 (16.22)
Moderate disease	34 (18.38)
Duration of treatment	6.56±5.74	<0.0001
Drug treatment		<0.0001
Single AGM	75 (37.5)
Two AGMs	95 (47.5)
>2 AGMs	30 (15)
Missed in 2 weeks	63 (31.5)	<0.0001
Forgetting		<0.0001
Almost never	71 (35.5)
Always	5 (2.5)
Frequently	16 (8)
Never	51 (25.5)
Sometimes	57 (28.5)
Systemic comorbidity
Diabetes	28 (14)	<0.0001
Hypertension	34 (17)	<0.0001
Tobacco addiction	27 (13.5%)	<0.0001
Baseline IOP left eye	28.13±9.01	<0.0001
IOP-L (current)	18.28±7.76	<0.0001
Baseline IOP right eye	27.62±7.48	<0.0001
IOP-R (current)	16.86±5.91	<0.0001

*For categorical variables: Chi-square test for equal proportions was used; for continuous variables: one-sample t-test was used. Abbreviations (IOP=Intraocular pressure, SD=Standard deviation)

Clinical characteristics of patients comprised one-eyed status in 19.5%, cataract in 5.5%, pseudophakia in 21.5%, and bilateral disease in 87%. Based on disc and VF evaluation, around 65% of patients belonged to advanced glaucoma level. The mean duration of treatment of patients was 6.56 ± 5.74 years, and most of the patients (62.5%) were using two or more antiglaucoma medications. The mean baseline IOP of patients was within 27.62 ± 7.48 mmHg in the right eye and 28.13 ± 9.01 mmHg in the left eye. A significant reduction in IOP was observed after medication from the baseline value of 16.86 ± 5.91 mmHg for the right eye and 18.28 ± 7.76 mmHg for the left eye. About 39% of the participants subjectively confirmed nonadherence to treatment.

Table 3 documents some of the possible common associations of nonadherence among the study participants, captured in this study.

Table 3.

Patients’ perspective regarding hindrance to adherence

Variable	Number (%)	Adherence		P*
		Absent (n=64) n (%)/mean±SD	Present (n=136) n (%)/mean±SD
Forgetfulness	141 (70.5)	57 (80.1)	84 (61.8)	<0.0001
Side effects	61 (30.5)	26 (40.6)	35 (25.7)	0.0329
Large number of medications	25 (12.5)	11 (17.2)	14 (10.3)	0.1691
Fatigue	74 (37)	33 (51.6)	41 (30.2)	0.0034
Poor understanding of the instillation technique	13 (6.5)	7 (10.9)	6 (4.4)	0.0808
Cost	52 (26)	20 (31.3)	32 (23.5)	0.2456
Unavailability of drug	38 (19)	14 (22.0)	24 (17.7)	0.4771
Could not go out for drug procurement	27 (13.5)	9 (14.1)	18 (13.2)	0.8731
Difficulty in opening bottle	15 (7.5)	10 (15.6)	5 (3.7)	0.0028
Difficulty in reading label	117 (58.5)	48 (75)	69 (50.7)	0.0012
Drug instillation and dosage not explained adequately	96 (48)	36 (56.3)	60 (44.1)	0.1092
Information about drug given	79 (39.5)	31 (48.4)	48 (35.3)	0.0761
Would prefer video demonstration	8 (4)	5 (7.8)	3 (2.2)	0.0591
No marking on bottle	26 (13)	13 (20.3)	13 (9.6)	0.0349

*Chi-square test for equal proportions. SD=Standard deviation

Factors that emerged for nonadherence to glaucoma medications were forgetfulness (70.5%), difficulty in reading medicine bottle labels (58.5%), problem in understanding the explanations of drug dosage (48%), inadequate information about the drugs given by the health-care worker (39.5%), fatigue (37%), and side effects (30.5%). A large number of medications (12.5%), cost (26%), unavailability (19%), difficulty in instillation (6.5%) of drugs and opening the bottle (75%), and absence of marking (13%) of the bottle were the other enumerated causes.

Based on the statistically significant factors associated with adherence to glaucoma medications, Table 4 depicts the unadjusted and adjusted logistic regression model results of the probability of adherence toward glaucoma medications corresponding to the associated factors. The unadjusted factors demonstrated that the absence of forgetfulness, side effects, and fatigue increase the probability of adherence. The obtained results in the bivariate analysis show that knowing handling, including opening the bottle and marking on the bottle, and reading the labels of glaucoma medicines increase the probability of adherence. The adjusted results based on those found to be significantly associated with adherence to glaucoma medicines suggested that the absence of forgetfulness, side effects, and fatigue in patients, along with the ability to read the label of medicines would increase the probability of adherence significantly.

Table 4.

Unadjusted and adjusted OR and 95% CI for the probability of adherence toward glaucoma medication corresponding to the associated factors

Variable	Unadjusted OR (95% CI)	Adjusted OR (95% CI)
Forgetfulness (yes)	5.04 (2.14–11.89)	6.04 (2.42–15.10)
Side effects (yes)	1.98 (1.05–3.71)	1.80 (0.88–3.66)
Fatigue (yes)	2.47 (1.34–4.55)	2.89 (1.43–5.83)
Opening bottle (no)	4.85 (1.58–14.86)	3.16 (0.79–12.64)
Reading label (no)	2.91 (1.51–5.63)	2.60 (1.24–5.43)
Marking on bottle (no)	2.41 (1.05–5.56)	1.65 (0.64–4.26)

CI=Confidence interval, OR=Odds ratio

The correlations of selected factors with adherence in relation to age, literacy status, number of medicines, comorbidities such as hypertension and diabetes, and knowledge about glaucoma medication are tabulated as a supplement in Tables S1–S6.

Table S1.

Association of factors for adherence to medication with age

Variable	Age class <40 years (n=40)			Age class 40–60 years (n=89)			Age ≥60 years (n=71)
	Adhere medication, n (%)		P	Adhere medication, n (%)		P	Adhere medication, n (%)		P
	No (n=16)	Yes (n=24)		No (n=26)	Yes (n=36)		No (n=22)	Yes (n=49)
Forgetfulness	12 (75.00)	15 (62.50)	0.4083	25 (96.15)	36 (57.14)	0.0003	20 (90.91)	33 (67.35)	0.0348
Side effects	6 (37.50)	7 (29.17)	0.5815	11 (42.31)	16 (25.40)	0.1145	9 (40.91)	12 (24.49)	0.1610
Fatigue	7 (43.75)	12 (50.00)	0.6982	13 (50.00)	18 (28.57)	0.0537	13 (59.09)	11 (22.45)	0.0025
Difficulty in opening bottle	1 (6.25)	3 (12.50)	0.6376	6 (23.08)	11.59)	0.0006	3 (13.64)	1 (2.04)	0.0852
Difficulty in reading label	8 (50.00)	13 (54.17)	0.7960	20 (76.92)	31 (49.21)	0.0162	20 (90.91)	25 (51.02)	0.0013
No marking on bottle	2 (12.50)	3 (12.50)	1.0000	5 (19.23)	6 (9.52)	0.2058	6 (27.27)	4 (8.16)	0.0323

The values in bold indicate statistical significance

Table S6.

Association of factors for adherence and knowledge about glaucoma

Variable	No knowledge (n=84)			Knowledge (n=116)
	Adhere medication		P	Adhere medication		P
	No (n=27)	Yes (n=57)		No (n=37)	Yes (n=79)
Forgetfulness	25 (92.59)	38 (66.67)	0.0104	32 (86.49)	46 (58.23)	0.0025
Side effects	11 (40.74)	10 (17.54)	0.0218	15 (40.54)	25 (31.65)	0.3475
Fatigue	14 (51.85)	18 (31.58)	0.0740	19 (51.35)	23 (29.11)	0.0202
Difficulty in opening bottle	2 (7.41)	2 (3.51)	0.5906	8 (21.62)	3 (3.80)	0.0044
Difficulty in reading label	21 (77.78)	31 (54.39)	0.0392	27 (72.97)	38 (48.10)	0.0119
No marking on bottle	4 (14.81)	5 (8.77)	0.4030	9 (24.32)	8 (10.13)	0.0439

The values in bold indicate statistical significance

Table S2.

Association of factors for adherence and number of glaucoma medicines

Variable	One (n=75)			Two (n=95)			More than two (n=30)
	Adhere medication, n (%)		P	Adhere medication, n (%)		P	Adhere medication, n (%)		P
	No (n=19)	Yes (n=56)		No (n=33)	Yes (n=62)		No (n=12)	Yes (n=18)
Forgetfulness	16 (84.21)	41 (73.21)	0.3322	29 (87.88)	29 (46.77)	<0.0001	12 (100.00)	14 (77.78)	0.1297
Side effects	4 (21.05)	13 (23.21)	0.8458	16 (48.48)	17 (27.42)	0.0401	6 (50.00)	5 (27.78)	0.2159
Fatigue	10 (52.63)	19 (33.93)	0.1480	17 (51.52)	21 (33.87)	0.0946	6 (50.00)	1 (5.56)	0.0086
Difficulty in opening bottle	1 (5.26)	1 (1.79)	0.4450	7 (21.21)	2 (3.23)	0.0076	2 (16.67)	2 (11.11)	0.6610
Difficulty in reading label	12 (63.16)	27 (48.21)	0.2599	26 (78.79)	37 (59.68)	0.0606	10 (83.33)	5 (27.78)	0.0029
No marking on bottle	13 (68.42)	49 (87.50)	0.0576	7 (21.21)	3 (4.84)	0.0295	0 (0.00)	316.67)	0.2552

The values in bold indicate statistical significance

Table S3.

Association of factors for adherence and literacy

Variable	Illiterate (n=76)			Literate (n=124)
	Adhere medication, n (%)		P	Adhere medication, n (%)		P
	No (n=23)	Yes (n=53)		No (n=41)	Yes (n=83)
Forgetfulness	21 (91.30)	28 (52.83)	0.0013	36 (87.80)	56 (67.47)	0.0149
Side effects	8 (34.78)	15 (28.30)	0.5721	18 (43.90)	20 (24.10)	0.0244
Fatigue	12 (52.17)	17 (32.08)	0.0975	21 (51.22)	24 (28.92)	0.0151
Difficulty in opening bottle	2 (8.70)	2 (3.77)	0.3773	8 (19.51)	3 (3.61)	0.0034
Difficulty in reading label	7 (30.43)	29 (54.72)	0.0515	32 (78.05)	45 (54.22)	0.0101
No marking on bottle	4 (17.39)	7 (13.21)	0.6339	9 (21.95	6 (7.23)	0.0180

The values in bold indicate statistical significance

Table S4.

Association of factors for adherence and diabetes

Variable	Nondiabetic (n=172)			Diabetic (n=28)
	Adhere medication, n (%)		P	Adhere medication, n (%)		P
	No (n=54)	Yes (n=118)		No (n=10)	Yes (n=18)
Forgetfulness	47 (87.04)	73 (61.86)	0.0008	10 (100.00)	11 (61.11)	0.0302
Side effects	23 (42.59)	28 (23.73)	0.0119	3 (30.00)	7 (38.89)	0.7029
Fatigue	28 (51.85)	35 (29.66)	0.0051	5 (50.00)	6 (33.33)	0.3869
Difficulty in opening bottle	9 (16.67)	4 (3.39)	0.0041	1 (10.00)	1 (5.56)	0.6617
Difficulty in reading label	39 (72.22)	62 (52.54)	0.0150	1 (10.00)	11 (61.11)	0.0159
No marking on bottle	12 (22.22)	12 (10.17)	0.0342	1 (10.00)	1 (5.56)	0.6617

The values in bold indicate statistical significance

Table S5.

Association of factors for adherence and hypertension

Variable	Nonhypertensive (n=166)			Hypertensive (n=28)
	Adhere medication		P	Adhere medication		P
	No (n=54)	Yes (n=112)		No (n=10)	Yes (n=14)
Forgetfulness	48 (88.89)	66 (58.93)	<0.000	9 (90.00)	18 (75.00)	0.3243
Side effects	20 (37.04)	30 (26.79)	0.1774	6 (60.00)	5 (20.83)	0.0261
Fatigue	30 (55.56)	36 (32.14)	0.0039	3 (30.00)	5 (20.83)	0.5659
Difficulty in opening bottle	9 (16.67)	4 (3.57)	0.0054	1 (10.00)	1 (4.17)	0.5080
Difficulty in reading label	42 (77.78)	57 (50.89)	0.0009	6 (60.00)	12 (50.00)	0.5945
No marking on bottle	11 (20.37)	12 (10.71)	0.0916	220.00v	1 (4.17)	0.2005

The values in bold indicate statistical significance

The obtained results show that literates with no comorbidities are seen to be more adherent and the effect of forgetfulness, side effects, and fatigue on adherence is less marked in this subgroup of patients.

Evaluation of existing knowledge and attitude of patients toward glaucoma disease showed that 85% were aware of the blinding sequel of the disease. However, 64% remained unaware of its asymptomatic nature, with only 50% understanding the gravity of missing medication dosage. Fifty-three percent had a persistent false belief that medication would partly restore their eyesight. Fifty-six percent preferred surgery over putting lifelong medications, 48% felt burdened by use of drugs, and 11% associated medications with reminders of their disease. Although medication-related side effects were found in 31%, a miniscule 5% discontinued medications due to these.

The drug-related practices by patients revealed that 59% relied on the size, shape, and color of the bottle or a younger family member for identifying drug bottles and 44% were dependent on caregivers for instillation of medications. More than half (55%) linked the drug instillation to daily activities like breakfast/lunch/dinner, and 66% placed them in a designated place (table/drawer close to the bed). The “white-collar effect” was seen in 26% of patients. Dependency on hospital supply was found in 60%.

Counseling was found to be suboptimal as per patients’ feedback, where despite 91% of patients understanding the need for continual medications, almost 31% were not aware of the continual asymptomatic nature of the disease. Practical demonstration of “how to put drugs” was identified as a need to perform act during counseling, as 47% of patients expressed dissatisfaction with the rudimentary demonstration of drug instillation.

Discussion

This study detailed glaucoma follow-ups of a tertiary hospital in North India in an attempt to clarify knowledge, attitude, and perceptions about the disease.

Nonadherence at 39% by self-reporting, corroborated by objective verification of empty bottle count at 32% falls within the reported nonadherence values of 18%–58% reported by other studies from the Indian peninsula.[16,19,21,22] Nonadherence was defined differently in other studies, ranging from missing of more than a single dose in a week or inability to explain the medication regimen.[23] Our study defined poor adherence as missing >1 day dosage/15 days. Glaucoma drug compliance has geographic connotations, with Asian countries reporting poorer compliance rates ranging from 19% to 76%.[20,24,25,26,27]

Poor adherence barriers have been categorized as patient factors (namely, forgetfulness, motivation, comorbidity), provider factors (poor communication or dissatisfaction with drops), situational/environmental factors (lack of support, travel, major life events), and medication regimen factors (regarding refill, cost, and/or side effects).[13,28,29,30] Patient factors, namely, forgetfulness at 71% followed by fatigue at 37%, were found to the common culprits for nonadherence in the current study. Forgetfulness has been previously cited as the commonest cause by other authors,[15,21] and automated reminders and/or linkage of drop instillation with daily activities like having lunch/dinner have now been inbuilt in our counseling sessions.

Medication procurement has previously been reported to be the commonest cause impacting adherence.[21,31] In the current study, drug unavailability and cost issues at 19% and 26%, respectively, emerged as less-relevant factors, since 60% depended on hospital supply and were provided their medications from the hospital. Dependence on hospital supply due to lack of any type of insurance emerged as a powerful contextual factor, keeping in mind that previous studies from India have reported lower figures of 10%–19%.[19,32,33]

Despite one-third of patients experiencing side effects due to eye drops, only 5% related their poor compliance to them. This finding, being very different from previous studies[30,34,35] including the one from similar geographic area[19] (reporting 25% drug discontinuation due to side effects), reinforced our belief that patient behavior and perception are contextual to the population studied.

Situational factors like dependence on a caregiver or an escort emerged prominent at 44% in the current study. This highlighted the important factor of drug autonomy/engagement of family members, which has not been studied extensively.[31]

Provider factors, namely, suboptimal communication/counseling, emerged as a critical aspect with “must-show eye drop instillation technique” were perceived as an important gap by 47% of glaucoma cases. Eye drop instillation method has been reported to be poor by Gupta et al.,[36] with only around 20% of patients recollecting being verbally explained the drop instillation technique and almost 100% having not been demonstrated the correct instillation technique. Patient education for correct drug instillation, therefore, needs to be included in glaucoma care practices.[37]

Patient age emerged as an important predictor for nonadherence, which was more significant in patients older than 60 years, similar to the findings of other studies.[24,34,38] Older people were also more likely to express a desire for video demonstration on drop instillation. Unlike previous studies, gender differences[24,33] were not perceived in our cases. Co-habitation with a spouse has been identified as a factor critical to adherence.[16] An insightful study by Tsai et al.[13] in a glaucoma cohort having 100% insurance cover reported a lack of caregivers at 17% to be the common cause of nonadherence. This did not emerge as a factor due to 92% of our cases being supported by a living spouse. Literacy level was significantly linked with greater awareness about the asymptomatic nature of the disease, understanding the importance of not missing medications, and blinding potential of the disease. The positive impact of literacy levels on both knowledge and treatment of glaucoma has been confirmed by previous authors,[17,19] whereas others have linked literacy to adherence due to better-paying capacity.[21] White collar effect (increased compliance preceding a doctor’s visit) and reduced hospital refills have also been positively linked to literacy levels.[23]

Knowledge about the disease has a positive impact on ensuring adherence.[17,19,34] In the current study, despite most patients (85%) being aware of the blinding aspect of the disease, around three fifths (65%) remained unaware of its continual asymptomatic nature. A surprising finding that emerged was that almost half (53%) persisted in the false belief that medications would restore some vision, thereby highlighting suboptimal understanding of the disease, a fact that was echoed by Gupta et al.[35] Such misconceptions were seen in people of both lower and higher socioeconomic status.[17]

Patients’ attitude toward their eye drops influences the desire to continue therapy. Despite 90% of our subjects being comfortable with their eye drops use, almost half (56%) preferred surgery. This again is a very contextual finding and reinforces the proponents of early surgery to control glaucoma blindness in developing countries like ours. Effective self-instillation of drops is a key aspect for continual adherence.[31,38] Drug instillation practices in our study were poor, where despite 92% being able to open the bottles properly, more than half admitted to erroneous practices like putting two or more than two drops at a time and not closing their eyes after instilling. This was similar to the reported outcomes of Gupta et al., with 9 of 10 of their patients being unable to instill eye drops correctly and one fourth instilling more than the required number of drops in the conjunctival sac.[36]

Limitations of our study

This study was confined to a single hospital and dealt with poorer socioeconomic strata of urban population. Reporting bias could have affected self-reported adherence and bottle count measurement.

Strengths of the study

A study of patients’ contextual perspectives provides insight into patients’ psychology and addressable determinants which need to be catered to improve adherence.

Conclusions and Recommendations

Dependence on hospital supply for their glaucoma medications emerged as a key aspect in patients of poor socioeconomic strata availing public hospital services. Forgetfulness, unavailability of drugs or inability to purchase drugs, polypharmacy, and dependency on caregiver for escort emerged as the primary reasons for nonadherence.

Disease misconceptions and practices of unsatisfactory drug instillation underscored suboptimal counseling. Counseling requires inclusion of video demonstration on drop instillation and linking meds use with daily activities like eating/bathing/sleeping or device reminders. Patients from poor socioeconomic status need more information and hand-holding as they lack support to compensate for the consequences of having glaucoma.

Financial support and sponsorship:

Nil.

Conflicts of interest:

There are no conflicts of interest.

Annexure 1: Questionnaire Regarding Patient's Perspective about Glaucoma Treatment

Please encircle the correct option or fill in the blanks.

1. Socio-demographic data

1. Name:

2. Age:………………………years

3. Gender

   a) Male b) Female

4. Place of Residence (distance from Guru Nanak Eye Center)

5. Socio economic Status:

   1. Monthly Income:…………….

   2. Dependents in family:….

   3. Job status -

   a) Employed b) Unemployed c) Retired d) Pensioner

6. Marital Status

   a. Married b) Unmarried c) Widower

7. Education

   a. Illiterate b) Literate c) Graduate

8. Family Profile

   a. Caregiver present b) Lives alone

9. Telephone no. ___________

2. Disease Related Information

1. Glaucoma a) Type:

   b. Laterality: Yes/No

   c. Severity:

   Visual Field + Disc Status:

   DDLS Grade:

   d. Duration in years:

   e. One Eyed Status:

2. Best corrected Visual Acuity: RE………. LE……….

3. Intraocular pressure

   i. Current ……………. in mm Hg

   ii. Reference IOP ………………. in mm Hg

4. No. of medications taken

   i. One ii. Two iii. More than two

5. Any ocular co-morbidities present e.g. Cataract, Pseudo phakia?

   i. Yes ii. No If yes, which one?.………………….

6. Any previous ocular surgery or laser treatment:

   i. Yes ii. No If yes, which?.………………….

7. Any Systemic Co-morbidity (Diabetes, Hypertension, Coronary

   Artery Disease, Mental Disease, Arthritis or others)

   i. Yes ii. No If yes, which one?.…………….

8. Any substance abuse e.g. Tobacco?

   i. Yes ii. No If yes, which one?……………….

3. Treatment characteristics

1. What Drug/s are you taking?

   ……………………………………….

2. Do you have a fixed time of the day you take your medications? i. Yes ii. No

3. Do you depend on someone else to instill the medication? i. Yes ii. No

4. How frequently do you refill your medication?

   i. Once a month

   ii. Less than once a month iii. More than once a month

5. From where do you procure the medication?

   i. GNEC ii. ESI iii. Buy at pharmacy iv. Others.…………….(specify)

6. Do you sometimes forget to take your medicine?

   i. Never 0

   ii. Almost never 1

   iii. Sometimes 2

   iv. Frequently 3

   v. Always 4

7. In the past 2 weeks, was there any day you missed taking your medication?……………………………………………….

8. Do you start using the eye drops more diligently before you have to visit your doctor?

   1. Yes, definitely -2 ii. Sometimes -1 iii. No 0

      i. Do you have any side effects from use of these drugs? If yes, what are the side effects?

      i. Yes 2 ii. Can’t say 1 iii. No 0

      ……………………………………………………………………

      ……………………………………………………………………

      ……………………………………………………………………

   2. Did you have to change any medication in the past because of these side effects?

      i. Yes 2 ii. Don’t remember 1 iii. No 0

   3. How bothered are you about the side effects of these drugs?

      i. Mild 1 ii. Moderately 2 iii. Very bothered 3

4. Knowledge and attitude towards disease

1. Do you understand that glaucoma is an asymptomatic disease?

   i. Yes, I know 2 ii. Am unsure 1 iii. Do not know 0

2. Are you aware that this disease (glaucoma) can be blinding if left untreated?

   i. Yes 2 ii. Don’t care 1 iii. No 0

3. Does this awareness influence your desire to continue taking the medication?

   i. Yes 2 ii. Can’t say 1 iii. No 0

4. Do you feel that these eye drops are not helping your eyes?

   i. Strongly agree 2 ii. Agree 1 iii. Disagree 0

5. Do you know that this medication will control the disease and not improve the vision?

   i. Yes 2 ii. Don’t Know 1 iii. No 0

6. What’s the main emotion you feel towards your drugs?

   i. Happy with them, they will save my vision

   ii. It is Ok, we will see what happens, take it in my stride

   iii. Dislike them, they remind me of this blinding disease

7. On a scale of 3, how cumbersome do you think putting medication

   i. Very cumbersome ii. Mildly cumbersome iii. Not at all cumbersome

8. If you have an option between Surgery vis-a-vis medication will you prefer Surgery?

   i. Yes ii. Cant’s say iii. No

9. Where do you keep your medication?

   i. Cool place (refrigerator) ii. Table/Drawer close to my bed iii. Anywhere

10. Does it matter if you miss a dose of the prescribed eye drop?

    i. Yes ii. Can’t say iii. No

11. If you miss a dose, do you take an extra dose the next time?

    i. Yes ii. Don’t Know iii. No

12. At the time of consultation did you ask your doctor about the frequency and amount of the drug dose to be instilled?

    i. Yes ii. Can’t say iii. No

13. Do you think you can stop taking medication if symptoms are relieved without consulting your doctor? i. Yes ii. Don’t Know iii. No

14. How satisfied are you with your treatment?

    i. Very satisfied ii. Satisfied iii. Not satisfied at all

15. If the answer to above is iii. give reasons for your dissatisfaction

    i. ……………………………………………………………

    ii. …………………………………………………………….

5. Instillation techniques/practices

1. Are you able to open the medication bottle by yourself?

   i. Yes ii. No

2. Can you read the label of the bottle?

   i. Yes ii. No

3. If the answer to above question is no, how do you identify the bottle.

   …………………………………………………………………

   …………………………………………………………………

4. How often do you mistake in identifying the bottle?

   i. Sometimes ii. Can’t say iii. Never

5. When you put the eye drops-how many drops get instilled?

   i. One ii. Two iii. More than two

6. Did your doctor tell you how to put your medication?

   i. Yes ii. Don’t remember iii. No

7. Will information regarding medication improve your compliance?

   i. Yes ii. Can’t say iii. No

8. Would it help if you were shown a video on how to instill eye drops?

   i. Yes, it would ii. Can’t say iii. No, it would not

9. Would you want some indication on your bottle on how many times to instill it?

   i. Yes definitely ii. Can’t say iii. Does not matter

10. Which treatment practice do you prefer and why?

    i. Any specific time of the day given to take your medication

    ii. Medication linked with an activity e.g. breakfast/lunch /dinner

    …………………………………………………………………

    ………………………………………………………………………………………………………………………………………………………………

6. Reasons given for poor adherence

1. Forgetfulness

2. Side effects

3. Large number of medications

4. Fatigue and impatience with using drugs

5. Difficulty in technique

6. Difficulty in obtaining medications:

   i. Cost

   ii. Unavailable

   iii. Could not go out and buy them or get them

7. Please suggest what improvements would you wish the industry or your doctor do to make it easier for you to use they eye drops

…………………………………………………………………

…………………………………………………………………

…………………………………………………………………

Thanks for sharing your time and views.

8. 1-month post verification

• Number of Empty bottles of medication:

• Were they as per requirement:

• Any additional information told: