Ophthalmic Epidemiology, 2014; 21(3): 144–152 ! Informa Healthcare USA, Inc. ISSN: 0928-6586 print / 1744-5086 online DOI: 10.3109/09286586.2014.903980
C ATARACT SURGERY B ARRIERS AND SURGIC AL OUTCOMES IN THE DEVELOPING WORLD
Reasons for Refusing Cataract Surgery in Illiterate Individuals in a Tribal Area of Andhra Pradesh, India Vilas Kovai1,2, B. V. M. Prasadarao3,4, Prakash Paudel1, Fiona Stapleton1,4, and David Wilson1,4 1
Public Health Division, Brien Holden Vision Institute, Sydney, Australia, 2International Centre for Advancement of Rural Eye Care, L V Prasad Eye Institute, Hyderabad, India, 3Community Health Nutritional Cluster, Palakonda, Srikakulam District, Andhra Pradesh, India, 4School of Optometry and Vision Science, University of New South Wales, Sydney, Australia
ABSTRACT Purpose: To assess the reasons for refusing cataract surgery in illiterate individuals in a tribal area of India. Methods: A prospective study evaluated 1046 subjects who had undergone screening in eye camps and included 398 of 492 referred subjects with cataract who refused to seek cataract surgery. Subjects were assessed to elicit general and specific reasons for non-compliance. Multiple logistic regression analysis was applied to determine the associations; p50.05 was considered significant. Results: Overall, 83% (329/398) of subjects reported that they could manage with their current vision. The five most common reasons they did not proceed with cataract surgery were: fear of losing current vision, work priority, lack of support systems, a dependency due to old age, and expenses required after surgery. Odds of seeking treatment were lower among unemployed subjects (odds ratio, OR, 0.4, 95% confidence interval, CI, 0.19–0.86; p = 0.01) and in patients with family income 51000 Indian rupees per month (OR 0.5, 95% CI 0.34–0.94; p = 0.02), and higher among those unilaterally blind (OR 10.8, 95% CI 3.3–35.6; p 0.01). Conclusion: In a tribal setting, 83% of individuals referred for cataract surgery did not proceed with surgery. Reasons given for non-compliance were not directly related to the surgery but focused on valid day-to-day difficulties anticipated to increase following surgery. Beyond accessibility and cost of surgery, other social and infrastructural factors need to be addressed to increase the uptake of cataract surgery. Keywords: Barriers, blindness, cataract, treatment seeking behavior, tribal
INTRODUCTION
partnership with government, private and non-governmental organizations, adopted disease-specific approaches to increase the capacity of eye care organizations to combat blindness.9 Recent evidence suggests that sight-restoring cataract surgery can positively impact recipients and their families, not only in reducing avoidable blindness but also in reducing the burden of poverty.10 Despite efforts to improve both access to, and positive impacts of cataract surgery, evidence suggests that there is suboptimal use of cataract surgical services in
A recent report on global estimates of vision impairment indicated that India bears a disproportional burden with 20.5% (8 million people) of total global blindness and 22% (54 million people) of global low vision.1 Cataract remains a leading cause of blindness globally and in India.1–4 A considerable proportion of people who are blind from cataract in India do not present for cataract surgery.5–8 The National Programme for Control of Blindness in India, in
Received 2 January 2013; Revised 2 December 2013; Accepted 4 January 2014; Published online 11 April 2014 Correspondence: Vilas Kovai, PhD, Senior Research Officer, Public Health Division, Brien Holden Vision Institute, Level 4 North Wing Rupert Myers Building, Gate 14 Barker Street, UNSW Sydney, NSW 2052, Australia. Tel: +61 2 9385 7876. Fax: +61 2 9385 7401. E-mail: v.kovai@ brienholdenvision.org
144
Reasons for Refusing Cataract Surgery in a Tribal Area 145 India.7,11,12 Outreach screening programs have been an integral part of many eye hospitals organized by private, non-governmental organizations, and district mobile units of the government in India. People blind from cataract are approached in their villages as part of these programs and offered treatment in nearby hospitals. However, evidence suggests that a large proportion of people who attend the eye camps are non-compliant with respect to cataract surgery.8,13 In addition, a large proportion of people with cataract blindness do not avail themselves of eye care services since they do not perceive their ocular condition to be serious.5,13,14 Reports from rural India are available on determinants of healthcare use15,16, influences of institutional delivery,17 uptake of immunization services,18 uptake of cataract surgery following eye camps,19 and ways to provide health services to tribal people.20 The challenges of healthcare in rural and tribal areas include socioeconomic constraints,11 inequitable services,21 lack of access to personal funds,19 and inaccessibility of medical services due to poor transportation.22 There remains a general paucity of information about the decision making processes for accepting or not taking up cataract surgery among the tribal rural population in India. Equally lacking is information regarding appropriate ways in which to improve the rate of uptake. This study evaluated reasons for refusing cataract surgery in a population of illiterate subjects living in a remote tribal region of Andhra Pradesh and specifically in those subjects who perceived their vision to be adequate.
MATERIALS AND METHODS Study Design and Setting This prospective study was conducted in a remote tribal area, Seethampeta Mandal in Srikakulam district of Andhra Pradesh, from July to September 2011. The study protocol was reviewed and approved by the institutional review board of LV Prasad Eye Institute, Hyderabad, India. The study was conducted in accordance with the tenets of the Declaration of Helsinki as revised in 2000. The purpose of the study was explained to, and informed consent was obtained from, all study participants prior to administering the questionnaires. The Seethampeta Mandal (sub-district administrative unit), with an estimated population of 54,464 and similar proportions of males and females, has 26 village panchayaths (village secretariats). Each village is geographically linked to 10 to 15 tribal hamlets. Savaras, an ancient tribe, are the predominant inhabitants of Seethampeta Mandal. 80% of the inhabitants are illiterate. !
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Sample Size Sample size was determined based on the assumption that the prevalence of not seeking eye care services was 37%5 with 5% level of significance and 5% absolute precision. The required sample size was 398 people, which included a 10% non-response rate. Following eye screening, all referred cataract subjects who did not comply with the referral advice were invited to participate in the study to be administered as a house visit (Figure 1). To generate the required sample size, we estimated 14–16 eye camps were necessary to recruit 400–500 subjects. The camp selection procedure included the following steps: First, the list of 56 sites (26 villages and 30 hamlets linked to these villages) was developed using local sub-district maps. A field volunteer chose a random starting number (from the numbers 1, 2, 3, and 4) to select the villages randomly. After selection of the first number, every subsequent fourth village of the listed villages was randomly selected to get 14 sites in Seethampeta Mandal. Subsequently, four bilingual volunteers with no ophthalmic background were identified from the local area and were briefly trained for tasks related to publicity of the eye camps, patient registration, identification of eligible subjects and counseling for cataract surgery. To screen and identify people with cataract blindness in one or both eyes, all persons aged 415 years were invited to attend the 14 cataract screening camps that were conducted in selected locations. Of 8092 subjects (415 years) residing in the catchment of 14 sites, 1046 (13%) were screened. Of the total screened, 492 subjects (47%) presented with cataract (presenting vision56/60) in at least one eye and were referred for further treatment. Of these, 44 (9%) accepted the cataract surgery and 448 (81%) refused to proceed with cataract surgery. Due to reasons related to study time and budget, only 398 (80%) of the 448 subjects who refused surgery were included in this study and were contacted in their homes to determine why they had refused cataract surgery. Of the 50 subjects who did not participate in the study, 33 (66%) were female and 8 (16%) were bilaterally blind. There were no differences in demographics and visual acuity between subjects who participated in the interview and those who did not. Free cataract surgery (at the nearest district hospital, which was 1 hour by road), free spectacles, free transportation and meals during the stay and cost-free follow-up at the next outreach camp were offered to all referred subjects.
Study Definitions Blindness was defined as presenting VA 56/60 in the better eye. Subjects with presenting VA 46/60, who improved vision with pinhole, were referred to a
146 V. Kovai et al. 1046 subjects attended 14 cataract screening camps
Vision screened by volunteer
Presenting vision ≤6/60 (n=492)
Presenting vision >6/60 (n=554)
Normal (n=294)
Cataract (n=492)
General eye disease (n=260)
38 subjects had complaints related to their eyes and wanted to meet medical doctor
Examination by ophthalmic officer
Referral to primary health center (n=298)
Referral to secondary eye care center (n=492)
15 days after referral, subjects were contacted
Refused surgery (n=448)
Accepted surgery (n=44)
398 study subjects contacted (326 unilaterally blind; 72 bilaterally blind); could not contact 50 subjects due to study logistics
FIGURE 1. Sample selection for determining reasons for cataract surgery refusal in Seethampeta Mandal, Andhra Pradesh.
government primary health center for further management. Subjects who had opacity of the crystalline lens in the pupillary area when seen with torchlight through the undilated pupil, and presented with VA 56/60 not improving with pinhole, were identified as patients with cataract. The phrase ‘‘general barriers to cataract surgery’’ refers to the reasons reported by the subjects for not seeking treatment despite being referred for surgery. The term ‘‘specific reasons’’ refers to the perceptions for non-compliance of those subjects who had perceived ‘‘no serious eye problem and can manage well with current vision.’’
Study Team and Data Collection Process The authors (VK, FS and BP) were involved in designing the study, preparation of questionnaires, and training the ophthalmic officer to collect data. Four local volunteers helped to organize the eye camps and one of these volunteers was trained briefly to measure distance vision. Subjects were invited to attend the eye camp sites for vision screening. One of the four trained volunteers measured the distance vision of subjects using a Snellen chart with an E optotype at a distance of 6 m. If the subject failed to identify the largest optotype, the distance to the chart Ophthalmic Epidemiology
Reasons for Refusing Cataract Surgery in a Tribal Area 147 was reduced by 1 m at a time. For those who were unable to read the chart at 1 m, finger counting was performed. The ophthalmic officer performed pinhole testing and eye anterior examination using a loupe, torch and ophthalmoscope without pupil dilatation. Subjects presenting with distance VA56/60, with lens opacification and no improvement with pinhole were considered to have cataract and were referred to the nearest government district hospital (up to 50 km away from the camp sites) for further treatment after counseling. Subjects presenting with other eye conditions, including refractive error, were referred to the nearest primary health center where patients could receive treatment for general eye problems under the supervision of a medical doctor, and had access to free spectacles from the district hospital. On the 16th day of the eye camp, the ophthalmic officer together with trained volunteers visited houses of referred patients to identify subjects who did not comply with the referral advice. Those who failed to seek cataract surgical services 15 days after referral were invited to participate in the study. After 1 day of training, a single investigator (ophthalmic officer) conducted the interviews (approximately 20 minutes for each participant) at the residence of the participants using two questionnaires: (1) The Andhra Pradesh Eye Disease Study (APEDS)3 standardized questionnaire for collecting general barriers to seeking cataract treatment among blind patients (presenting VA56/60), and; (2) A newly developed questionnaire used to assess specific reasons of those who felt they managed well despite having poor vision. In brief, the new questionnaire initially had a list of 18 items which were developed following focus group discussions comprising professionals with public health, optometry, ophthalmology and social science experience. The new questionnaire was translated into the local language and retranslated into English. A pilot study (for clarity, comprehension and content validity) was carried out using 50 subjects. Following the pilot, the questionnaire items were reduced to 14 and changes related to use of appropriate local language were made to suit the local context. The participant responses for the APEDS questionnaire and the newly developed questionnaire were recorded as: 0 = No, 1 = Yes, and 2 = most important response.
knowledge that cataract is treatable, and; (c) patients who sought treatment previously. Each outcome was analyzed separately. The co-variables adjusted for in the multiple logistic regression analysis were: age, sex, marital status, occupation, employment, family income and category of blindness. All the variables were introduced in the model simultaneously and none were optimized. Statistical significance was set at 5%. The odds ratios (ORs) with respective 95% confidence intervals (CIs) were reported for each factor level.
RESULTS Study Subjects The demographic distribution of study subjects is shown in Table 1. Of 398 study subjects, 326 (81.5%) were unilaterally blind and 72 (18.5%) were bilaterally blind. The mean age of subjects was 67.2 ± 8.2 years with an age range of 50–90 years, and 64.8% were female. Three-quarters of respondents were aged between 60 and 80 years. Two-thirds of respondents were hill area workers in agricultural employment, and 71.6% of subjects had a family income 51000 Indian rupees (INR) per month (US$20) Those who had noticed a decrease in vision comprised 71.7% (234/326) of those presenting as unilaterally blind and 95.8% (69/72) of those presenting as bilaterally blind. Similarly, 82.5% (269/326) of unilaterally blind subjects and 80.5% (58/72) of bilaterally blind subjects were aware that they had cataract. Of the total, 30.2% (100/326) of subjects with unilateral blindness and 4.16% (3/72) of subjects with bilateral blindness had sought treatment for their eye problem previously.
General Barriers for not Seeking Cataract Treatment Table 2 presents the general barriers perceived by the study subjects. The main reasons stated for not seeking cataract treatment by both unilaterally and bilaterally blind subjects were ‘‘able to see adequately’’ (79.1% and 69.4%, respectively), ‘‘did not have a serious problem’’ (4.9% and 6.9%, respectively) and ‘‘event of aging so need no treatment’’ (4.6% and 8.3%, respectively).
Statistical Analysis SPSS software version 16 (SPSS Inc, Chicago, IL, USA) was used for data analysis. The frequency distribution of subjects’ demographic characteristics and barriers (general and specific) were calculated. Multiple logistic regression analysis was applied to determine the association of three dependent variables, namely: (a) decreased vision noticed by patients; (b) patients’ !
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Specific Reasons for Stating ‘‘I Can See Well with Current Vision and do not have a Serious Problem’’ The specific reasons were obtained from 274 unilaterally blind and 55 bilaterally blind subjects who perceived that they did not have any serious problem
148 V. Kovai et al. TABLE 1. Demographic distribution of subjects from Seethampeta Mandal, Andhra Pradesh, including those who noticed a decrease in vision, those who perceived cataract can be treated, and those who sought treatment.
Variable Blindness
Unilateral Bilateral Age, years 50–59 60–69 70–79 80–89 09 Sex Male Female Occupation Labor work Cultivation on hilly areas Agriculture labor Others Main earner in the family Yes Semi No Family income range 5INR1000 INR1001– INR2500 INR2501– INR5000 INR5000 Total
Total (N = 398) n (%)
Noticed decrease in vision (N = 303) n (%)
Perception: cataract can be treated (N = 327) n (%)
Sought treatment for eye problem in the past (N = 103) n (%)
326 (81.9) 72 (18.0) 41 (10.3) 170 (42.7) 130 (32.7) 55 (13.8) 2 (0.5) 140 (35.2) 258 (64.8) 17 (4.3) 266 (66.8) 54 (13.6) 61 (15.3) 26 (6.5) 328 (82.4) 44 (11.1) 285 (71.6) 105 (26.4) 5 (1.3) 3 (0.8) 398
234 (71.8) 69 (95.8) 30 (73.7) 134 (78.8) 96 (73.8) 41 (74.5) 2 (100.0) 100 (71.4) 203 (78.6) 10 (58.8) 204 (76.6) 40 (74.0) 49 (80.3) 18 (69.2) 258 (78.6) 27 (61.3) 226 (79.2) 70 (66.6) 4 (80.0) 3 (100.0) 303
269 (82.5) 58 (80.6) 29 (70.7) 136 (80.0) 119 (91.5) 41 (74.5) 2 (100.0) 122 (87.1) 205 (79.4) 14 (82.3) 218 (81.9) 48 (88.8) 47 (77.0) 20 (76.9) 275 (83.8) 32 (72.7) 234 (82.1) 88 (83.8) 3 (60.0) 2 (66.6) 327
100 (30.7) 3 (4.2) 9 (21.9) 37 (21.7) 38 (29.2) 18 (32.7) 1 (50.0) 41 (29.2) 62 (24.0) 5 (29.4) 68 (25.5) 15 (27.7) 15 (24.5) 6 (23.0) 80 (24.3) 17 (38.6) 65 (22.8) 37 (35.2) 1 (20.0) 0 (0.0) 103
INR, Indian rupees
TABLE 2. General barriers to eye care for not seeking treatment among those unilaterally and bilaterally blind from cataract in Seethampeta Mandal, Andhra Pradesh (N = 398). General barrier 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
Dominant person in family, if other than the subject, did not feel the need for seeking health care Did not have a serious problem Able to see adequately Eye diseases/decrease in vision are natural with growing old and so do not need treatment Afraid that seeing someone for eye checkup would reveal vision loss, and therefore cause worry Did not know where to go for eye checkup Had to travel far for eye checkup No one willing to escort for eye checkup Family/harvest/business/other obligations prevent eye checkup Did not have money to pay for eye checkup Did not feel comfortable with the indigenous practitioner that had access to Did not feel comfortable with the homeopathic/ayurvedic/unani practitioner that had access to Did not feel comfortable with the eye doctor/general medical doctor that had access to Eye checkup not a priority because of other serious medical problems Would like eye checkup but other medical problems prevented going Other (specify)
or were able to see well enough. The five specific reasons selected by the unilaterally blind subjects (n = 274) comprised: ‘‘fear of loss of vision’’ in 112 subjects (40.8%), ‘‘busy with agricultural works/ opportunity cost’’ in 45 subjects (16.4%), ‘‘no support systems for escort and transportation’’ in 33 subjects
Unilateral blindness (N = 326) n (%)
Bilateral blindness (N = 72) n (%)
4 (1.2)
1 (1.3)
16 (4.9) 258 (79.1) 15 (4.6)
5 (6.9) 50 (69.4) 6 (8.3)
–
–
5 (1.5) 2 (0.6) 13 (3.9) 6 (1.8) 3 (0.9) – –
3 (4.1) 1 (1.3) 2 (2.7) 3 (4.1) 0 (0.0) – –
1 (0.3)
0 (0.0)
1 (0.3) 2 (0.6) –
0 (0.0) 1 (1.3) –
(12.0%), ‘‘no perceived need due to old age’’ in 21 subjects (7.6%) and ‘‘can’t bear expenses after surgery’’ for 19 subjects (6.9%). The five specific reasons given by the bilaterally blind subjects (n = 55) comprised: ‘‘fear of loss of vision’’ in 19 subjects (34.5%), ‘‘no support systems for Ophthalmic Epidemiology
Reasons for Refusing Cataract Surgery in a Tribal Area 149 escort and transportation’’ in 10 subjects (18.1%), ‘‘busy with agricultural works/opportunity cost’’ in nine subjects (16.3%), ‘‘no perceived need due to old age’’ in four subjects (7.2%), and ‘‘can’t bear expenses after surgery’’ in three subjects (5.4%).
Association of Demographic Variables with Dependent Variables The odds of noticing decreased vision were higher among those who were employed (OR 2.7, 95% CI 1.30–5.8; p50.01) and those patients whose family income was 5INR1000/month (OR 1.8, 95% CI 1.0– 3.0; p = 0.02). The odds of noticing decreased vision were lower among unilaterally blind subjects (OR 0.1, 95% CI 0.03–0.3; p50.01). There was no significant association with age, sex, marital status and occupation. The odds of awareness that cataract can be treated was lower among those who were younger than 60 years of age (OR 0.4, 95% CI 0.28–0.85; p = 0.01). There was no significant association with sex, marital status, occupation, earning status, income and status of blindness. The odds of seeking treatment were lower among those who were employed (OR 0.4, 95% CI 0.2–0.8; p = 0.01) and those patients whose family income was 5INR1000/month (OR 0.5, 95% CI 0.34–0.94; p = 0.02). The odds of seeking treatment were higher among subjects with unilateral blindness (OR 10.8, 95% CI 3.3–35.6; p 0.01). There was no significant association with age, sex, marital status and occupation.
DISCUSSION This study aimed to assess barriers to seeking treatment in individuals with cataract blindness in a tribal region of India; specifically in those who reported their vision as adequate. The majority of unilaterally blind (226/326) and almost all bilaterally blind (69/72) subjects referred for cataract surgery did not make any attempt to seek treatment despite noticing a
reduction in their vision and being aware that cataract is treatable (Table 1). This finding from tribal people in rural India is similar to recent literature which reports a significant proportion of people who received recommendations for cataract surgery from eye camps in rural India do not take up cataract surgery even when offered free of cost.12 Barrier studies from rural parts of India in 1981,11 1991,7 1995,14 1999,12 2004,13 20075,8 corroborate the present study’s findings that a majority of those identified as having an eye problem and who could benefit from treatment did not seek treatment. These reports demonstrated that the commonly cited barriers to cataract surgery include: no preference for surgery, cost, accessibility, and poor visual outcome. However, these reports do not provide evidence or explanation as to why many patients do not present for surgery even if eye care services are relatively accessible. In the present study, 84% of subjects with unilateral blindness (274/326) and 76% of subjects with bilateral blindness (55/72) had the perception that ‘‘they can see well and have no serious problem despite being referred for further treatment.’’ The five specific reasons (Table 3) behind this perception comprise: (1) fear (fear of facing bad experience similar to neighbor, fear of loss of vision and fear of surgery); (2) have to work/opportunity cost; (3) no support systems for escort and transportation; (4) dependency due to old age, and; (5) no money for post-operative expenses if they undergo surgery. The reasons cited are consistent with other reports from rural populations of India.5,8,12,14,19 However, each of these reasons stated requires a specific strategy to understand the decision-making process to accept cataract surgery. According to Anderson’s healthcare use model, predisposing characteristics, and enabling and need factors influence the decision-making of healthcare use.23 All the five factors above are a mix of predisposing, as well as enabling factors, at the individual level which influence the decisionmaking of use of healthcare services. The findings from this study allow us to conclude that these factors seem to be constraining the decision-making process in accepting cataract surgery and subjects in this
TABLE 3. Specific reasons perceived by those who did not comply with recommendations of cataract surgery, Seethampeta Mandal, Andhra Pradesh (N = 329). Specific reason 1 2 3 4 5 6 !
Fear (fear of facing bad experience similar to neighbor, fear of loss of vision and fear of surgery) Had to work/opportunity cost No support systems for escort and transportation Dependency due to old age No money for post-operative expenses if undergo surgery Other reason 2014 Informa Healthcare USA, Inc.
Unilateral blindness (N = 274) n (%)
Bilateral blindness (N = 55) n (%)
112 (40.8)
19 (34.5)
45 33 21 19 44
(16.4) (12.0) (7.6) (6.9) (16.3)
10 9 4 3 5
(18.1) (16.3) (7.2) (5.4) (18.5)
150 V. Kovai et al. study are therefore likely to live in denial of the need for cataract surgery despite reduced sight. Age and fear factors might be difficult to change but the other three factors can be managed effectively according to an Australian study in Indigenous communities.24 This study demonstrated that access to services for Indigenous people could be improved if eye care is delivered within culturally appropriate facilities. However, recruitment of local communitybased coordinators,24 availability of eye screening facilities and affordable spectacles within the Indigenous setting where eye care services are planned require constant monitoring and evaluation systems to ensure that there are no more unnecessary barriers to obtaining eye care interventions after receiving prescriptions. Such oversight is critical to improving uptake of eye care services.19,25–28 Besides age and fear, people with poverty and illiteracy have a lower uptake of health care services.15 For example, in this study, the odds of seeking cataract surgery were low among patients whose family income was 5INR1000/month (US$20) and those who were employed, despite the higher odds of noticing a decrease in vision (Table 4). A previous study that explored barriers to eye care among the visually impaired from the same region corroborates these findings.5 The majority of the tribal population living in rural areas are poor and usually busy with subsistent agricultural activities29 and thus likely to fear making a decision in favor of cataract surgery
even when they notice reduced vision.5 Thus, work pressure and low income in these categories of people were acting as disabling factors for acceptance of cataract surgery. Some reports of factors associated with healthcare use in rural India support these arguments.15,16 Scheduled Tribes living in rural areas are usually worse off, especially for educational attainment,30 and are usually deprived of the basic needs of life; facing chronic hunger or semi-starvation.29 There is a tremendous need for building good relationships between receivers and providers in order to improve health communication and trust in geographical settings in which the population has a distinct culture and language, and is facing conditions such as poverty, chronic hunger, low income, illiteracy and work pressure. This is even more important when the working age group have low odds of knowledge that a cataract problem can be treated (Table 4). Appropriate outreach services,19,21,25–28 integrated with primary, secondary and tertiary care could address this need in helping communities to receive convenient services with cost savings, and in increasing understanding by both the receivers and providers of the clinical and management issues; thus helping to minimize the barriers (because of fear and age factors) to use of health systems. The new 14-item questionnaire was able to provide clarity on specific reasons to state the perception ‘‘I can see well despite being blind due to cataract’’;
TABLE 4. Multivariable adjusted odds ratiosa for effect of demographic variables on (1) noticing decreased vision, (2) perception that cataract can be treated, and (3) seeking treatment, in cataract-affected subjects, Seethampeta Mandal, Andhra Pradesh.
Predictor
Noticing decreased vision, OR (95% CI)
p value
Cataract can be treated, OR (95% CI)
p value
Having sought treatment, OR (95% CI)
p value
Age, years 560 460
0.9 (0.53–1.5) 1
0.72
0.4 (0.28–0.85) 1
0.01b
0.6 (0.40–1.15) 1
0.15
Sex Male Female
0.6 (0.37–1.41) 1
0.13
1.3 (0.7–2.5) 1
0.35
1.2 (0.70–2.09) 1
0.48
Marital status Married Widow/widower
1.0 (0.6–1.7) 1
0.75
1.4 (0.7–2.5) 1
0.24
1.0 (0.6–1.7) 1
0.94
Occupation Labor work Cultivation on hilly areas
1.0 (0.60–1.7) 1
0.93
0.8 (0.45–1.47) 1
0.17
1.0 (0.5–1.7) 1
0.97
Employed Yes No
2.7 (1.3–5.8) 1
50.01b
1.7 (0.78–3.6) 1
0.91
0.4 (0.19–0.86) 1
0.01b
Family income 5INR1000 4INR1000 Unilateral blindness Bilateral blindness
1.8 (1.08–3.0) 1 0.1 (0.03–0.35) 1
1.03 (0.57–1.86) 1 1.1 (0.5–2.2) 1
0.69
0.5 (0.34–0.94) 1 11.0 (3.3–35.6) 1
0.02b
0.02b 50.01b
0.6
50.01b
a
Co-variables adjusted for: age, sex, marital status, occupation, employment, family income and category of blindness. Significant for p50.05 CI, confidence interval; INR, Indian rupees; OR, odds ratio b
Ophthalmic Epidemiology
Reasons for Refusing Cataract Surgery in a Tribal Area 151 however this needs to be validated further in future studies. The study had a few important limitations. First, referred patients were contacted 15 days after the cataract screening camps and thus the sample selection undertaken could suggest a selection bias. It is arguable that it is too early to comment that they did not comply with the advice after the period. While a longer time interval between screening and second contact would have been preferable, loss to follow up of subjects would mitigate against this approach. Second, researcher bias: The researcher might harbor unperceived bias due to his personal experience in working in such camps. However, since the content of the questionnaire was developed using focus group discussions, this limitation was probably minimized. Third, construct validity of the new questionnaire: The new questionnaire was not designed to understand patient barriers related to geographical remoteness, cultural appropriateness of services, poor doctor-patient communications, or inadequate communications between hospitals and remote communities. Future studies would be improved if these items are included in the questionnaires and the questionnaires validated using Rasch analysis. The high rate of refusal of cataract surgery in this study raises important areas to explore further in future studies: that results might have been distorted by the 2-week follow-up period, and; that most of those employed refused surgery suggesting that being employed is a factor linked to timing, ie taking time off work might not be convenient, especially if work is seasonal. In conclusion, in the present study, subjects who were employed and those with low income were more likely to refuse surgery, despite being aware of their poor vision. Understanding reasons for refusal is important in increasing acceptance of surgery and these issues need to be addressed prior to implementing the strategies to improve uptake of cataract treatment services in tribal areas.
ACKNOWLEDGMENTS It is noteworthy that this study was the Master of Community Eye Health thesis of the second author who would like to acknowledge the support of ICARE - LV Prasad Eye Institute, Hyderabad, India and School of Optometry and Vision Science of University of New South Wales, Sydney Australia; National programme for the control of Blindness, Government of Andhra Pradesh, India and Andhra Pradesh Right To Sight Society, Hyderabad, India. The authors are also thankful to all study subjects, internal reviewers of Brien Holden Vision Institute and specially acknowledge the technical support of !
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Dr Judith Flanagan for editing and reviewing this paper.
DECLARATION OF INTEREST The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
REFERENCES 1. Pascolini D, Mariotti SP. Global estimates of visual impairment: 2010. Br J Ophthalmol 2012;96:614–618. 2. Bourne RRA Stevens GA, White RA, et al., on behalf of the Vision Loss Expert Group. Causes of vision loss worldwide, 1990–2010: a systematic analysis. The Lancet Global Health 2013; published online 11 November 2013. http:// dx.doi.org/10.1016/S2214-109X(13)70113-X. 3. Dandona L, Dandona R, Srinivas M, et al. Blindness in the Indian state of Andhra Pradesh. Invest Ophthalmol Vis Sci 2001;42:908–916. 4. Nirmalan PK, Thulasiraj RD, Maneksha V, et al. A population based eye survey of older adults in Tirunelveli district of south India: blindness, cataract surgery, and visual outcomes. Br J Ophthalmol 2002;86: 505–512. 5. Kovai V, Krishnaiah S, Shamanna BR, et al. Barriers to accessing eye care services among visually impaired populations in rural Andhra Pradesh, South India. Indian J Ophthalmol 2007;55:365–371. 6. Dandona R, Dandona L, Naduvilath TJ, et al. Utilisation of eyecare services in an urban population in southern India: the Andhra Pradesh eye disease study. Br J Ophthalmol 2000;84:22–27. 7. Brilliant GE, Lepkowski JM, Zurita B, Thulasiraj RD. Social determinants of cataract surgery utilization in south India. The Operations Research Group. Arch Ophthalmol 1991;109:584–589. 8. Chandrashekhar TS, Bhat HV, Pai RP, Nair SK. Coverage, utilization and barriers to cataract surgical services in rural South India: results from a population-based study. Public Health 2007;121:130–136. 9. Jose R, Rathore AS, Rajshekar V, Sachdeva S. Salient features of the National Program for Control of Blindness during the XIth five-year plan period. Indian J Ophthalmol 2009;57:339–340. 10. Finger RP, Kupitz DG, Fenwick E, et al. The impact of successful cataract surgery on quality of life, household income and social status in South India. PloS one 2012;7: e44268. 11. Venkataswamy G, Brilliant G. Social and economic barriers to cataract surgery in rural south India. Vis Impairment Blindness 1981;75:405–468. 12. Fletcher AE, Donoghue M, Devavaram J, et al. Low uptake of eye services in rural India: a challenge for programs of blindness prevention. Arch Ophthalmol 1999;117:1393–1399. 13. Nirmalan PK, Katz J, Robin AL, et al. Utilisation of eye care services in rural south India: the Aravind Comprehensive Eye Survey. Br J Ophthalmol 2004;88:1237–1241. 14. Gupta SK, Murthy GV. Where do persons with blindness caused by cataracts in rural areas of India seek treatment and why? Arch Ophthalmol 1995;113:1337–1340. 15. Singh PK, Kumar C, Rai RK, Singh L. Factors associated with maternal healthcare services utilization in nine high focus states in India: a multilevel analysis based on 14,385 communities in 292 districts. Health Policy Plan 2013;1–18.
152 V. Kovai et al. 16. Navaneetham K, Dharmalingam A. Utilization of maternal health care services in Southern India. Soc Sci Med 2002;55: 1849–1869. 17. Nair M, Ariana P, Webster P. What influences the decision to undergo institutional delivery by skilled birth attendants? A cohort study in rural Andhra Pradesh, India. Rural Remote Health 2012;12:1–11. 18. Banerjee AV, Duflo E, Glennerster R, Kothari D. Improving immunisation coverage in rural India: clustered randomised controlled evaluation of immunisation campaigns with and without incentives. Br Med J 2010;340:c2220. 19. Finger RP, Kupitz DG, Holz FG, et al. Regular provision of outreach increases acceptance of cataract surgery in South India. Trop Med Int Health 2011;16:1268–1275. 20. Rao PV, Bhuskade RA, Desikan KV. Modified leprosy elimination campaign (MLEC) for case detection in a remote tribal area in the State of Orissa, India. Leprosy Rev 2000;71:377–381. 21. Rao GN, Khanna RC, Athota SM, et al. Integrated model of primary and secondary eye care for underserved rural areas: the L V Prasad Eye Institute experience. Indian J Ophthalmol 2012;60:396–400. 22. Malhotra R, Uppal Y, Misra A, et al. Increasing access to cataract surgery in a rural area – a support strategy. Indian J Public Health 2005;49:63–67. 23. Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav 1995;36: 1–10.
24. Turner AW, Xie J, Arnold AL, et al. Eye health service access and utilization in the National Indigenous Eye Health Survey. Clin Exp Ophthalmol 2011;39:598–603. 25. Boudville AI, Anjou MD, Taylor HR. Indigenous access to cataract surgery: an assessment of the barriers and solutions within the Australian health system. Clin Exp Ophthalmol 2013;41:148–154. 26. Gruen RL, Weeramanthri TS, Bailie RS. Outreach and improved access to specialist services for indigenous people in remote Australia: the requirements for sustainability. J Epidemiol Comm Health 2002;56:517–521. 27. Kovai V, Rao GN, Holden B, et al. An estimate of patient costs and benefits of the new primary eye care model utilization through vision centers in Andhra Pradesh, India. Asia-Pacific J Public Health/Asia-Pacific Acad Consort Public Health 2010;22:426–435. 28. Zhang M, Wu X, Li L, et al. Understanding barriers to cataract surgery among older persons in rural China through focus groups. Ophthalmic Epidemiol 2011;18: 179–186. 29. Centre for Environment and Food Security. Political economy of hunger in Adivasi areas In: Political Economy of Hunger in Adivasi Areas. New Delhi: Centre for Environment and Food Security; 2005. 30. Maitreyi Bordia Das. Indigenous Peoples, Poverty and Development. Accessed 2 August 2013 from: http://sitere sources.worldbank.org/EXTINDPEOPLE/Resources/ 407801-1271860301656/Chapter_6_India.pdf.
Ophthalmic Epidemiology
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C ATARACT SURGERY B ARRIERS AND SURGIC AL OUTCOMES IN THE DEVELOPING WORLD
Reasons for Refusing Cataract Surgery in Illiterate Individuals in a Tribal Area of Andhra Pradesh, India Vilas Kovai1,2, B. V. M. Prasadarao3,4, Prakash Paudel1, Fiona Stapleton1,4, and David Wilson1,4 1
Public Health Division, Brien Holden Vision Institute, Sydney, Australia, 2International Centre for Advancement of Rural Eye Care, L V Prasad Eye Institute, Hyderabad, India, 3Community Health Nutritional Cluster, Palakonda, Srikakulam District, Andhra Pradesh, India, 4School of Optometry and Vision Science, University of New South Wales, Sydney, Australia
ABSTRACT Purpose: To assess the reasons for refusing cataract surgery in illiterate individuals in a tribal area of India. Methods: A prospective study evaluated 1046 subjects who had undergone screening in eye camps and included 398 of 492 referred subjects with cataract who refused to seek cataract surgery. Subjects were assessed to elicit general and specific reasons for non-compliance. Multiple logistic regression analysis was applied to determine the associations; p50.05 was considered significant. Results: Overall, 83% (329/398) of subjects reported that they could manage with their current vision. The five most common reasons they did not proceed with cataract surgery were: fear of losing current vision, work priority, lack of support systems, a dependency due to old age, and expenses required after surgery. Odds of seeking treatment were lower among unemployed subjects (odds ratio, OR, 0.4, 95% confidence interval, CI, 0.19–0.86; p = 0.01) and in patients with family income 51000 Indian rupees per month (OR 0.5, 95% CI 0.34–0.94; p = 0.02), and higher among those unilaterally blind (OR 10.8, 95% CI 3.3–35.6; p 0.01). Conclusion: In a tribal setting, 83% of individuals referred for cataract surgery did not proceed with surgery. Reasons given for non-compliance were not directly related to the surgery but focused on valid day-to-day difficulties anticipated to increase following surgery. Beyond accessibility and cost of surgery, other social and infrastructural factors need to be addressed to increase the uptake of cataract surgery. Keywords: Barriers, blindness, cataract, treatment seeking behavior, tribal
INTRODUCTION
partnership with government, private and non-governmental organizations, adopted disease-specific approaches to increase the capacity of eye care organizations to combat blindness.9 Recent evidence suggests that sight-restoring cataract surgery can positively impact recipients and their families, not only in reducing avoidable blindness but also in reducing the burden of poverty.10 Despite efforts to improve both access to, and positive impacts of cataract surgery, evidence suggests that there is suboptimal use of cataract surgical services in
A recent report on global estimates of vision impairment indicated that India bears a disproportional burden with 20.5% (8 million people) of total global blindness and 22% (54 million people) of global low vision.1 Cataract remains a leading cause of blindness globally and in India.1–4 A considerable proportion of people who are blind from cataract in India do not present for cataract surgery.5–8 The National Programme for Control of Blindness in India, in
Received 2 January 2013; Revised 2 December 2013; Accepted 4 January 2014; Published online 11 April 2014 Correspondence: Vilas Kovai, PhD, Senior Research Officer, Public Health Division, Brien Holden Vision Institute, Level 4 North Wing Rupert Myers Building, Gate 14 Barker Street, UNSW Sydney, NSW 2052, Australia. Tel: +61 2 9385 7876. Fax: +61 2 9385 7401. E-mail: v.kovai@ brienholdenvision.org
144
Reasons for Refusing Cataract Surgery in a Tribal Area 145 India.7,11,12 Outreach screening programs have been an integral part of many eye hospitals organized by private, non-governmental organizations, and district mobile units of the government in India. People blind from cataract are approached in their villages as part of these programs and offered treatment in nearby hospitals. However, evidence suggests that a large proportion of people who attend the eye camps are non-compliant with respect to cataract surgery.8,13 In addition, a large proportion of people with cataract blindness do not avail themselves of eye care services since they do not perceive their ocular condition to be serious.5,13,14 Reports from rural India are available on determinants of healthcare use15,16, influences of institutional delivery,17 uptake of immunization services,18 uptake of cataract surgery following eye camps,19 and ways to provide health services to tribal people.20 The challenges of healthcare in rural and tribal areas include socioeconomic constraints,11 inequitable services,21 lack of access to personal funds,19 and inaccessibility of medical services due to poor transportation.22 There remains a general paucity of information about the decision making processes for accepting or not taking up cataract surgery among the tribal rural population in India. Equally lacking is information regarding appropriate ways in which to improve the rate of uptake. This study evaluated reasons for refusing cataract surgery in a population of illiterate subjects living in a remote tribal region of Andhra Pradesh and specifically in those subjects who perceived their vision to be adequate.
MATERIALS AND METHODS Study Design and Setting This prospective study was conducted in a remote tribal area, Seethampeta Mandal in Srikakulam district of Andhra Pradesh, from July to September 2011. The study protocol was reviewed and approved by the institutional review board of LV Prasad Eye Institute, Hyderabad, India. The study was conducted in accordance with the tenets of the Declaration of Helsinki as revised in 2000. The purpose of the study was explained to, and informed consent was obtained from, all study participants prior to administering the questionnaires. The Seethampeta Mandal (sub-district administrative unit), with an estimated population of 54,464 and similar proportions of males and females, has 26 village panchayaths (village secretariats). Each village is geographically linked to 10 to 15 tribal hamlets. Savaras, an ancient tribe, are the predominant inhabitants of Seethampeta Mandal. 80% of the inhabitants are illiterate. !
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Sample Size Sample size was determined based on the assumption that the prevalence of not seeking eye care services was 37%5 with 5% level of significance and 5% absolute precision. The required sample size was 398 people, which included a 10% non-response rate. Following eye screening, all referred cataract subjects who did not comply with the referral advice were invited to participate in the study to be administered as a house visit (Figure 1). To generate the required sample size, we estimated 14–16 eye camps were necessary to recruit 400–500 subjects. The camp selection procedure included the following steps: First, the list of 56 sites (26 villages and 30 hamlets linked to these villages) was developed using local sub-district maps. A field volunteer chose a random starting number (from the numbers 1, 2, 3, and 4) to select the villages randomly. After selection of the first number, every subsequent fourth village of the listed villages was randomly selected to get 14 sites in Seethampeta Mandal. Subsequently, four bilingual volunteers with no ophthalmic background were identified from the local area and were briefly trained for tasks related to publicity of the eye camps, patient registration, identification of eligible subjects and counseling for cataract surgery. To screen and identify people with cataract blindness in one or both eyes, all persons aged 415 years were invited to attend the 14 cataract screening camps that were conducted in selected locations. Of 8092 subjects (415 years) residing in the catchment of 14 sites, 1046 (13%) were screened. Of the total screened, 492 subjects (47%) presented with cataract (presenting vision56/60) in at least one eye and were referred for further treatment. Of these, 44 (9%) accepted the cataract surgery and 448 (81%) refused to proceed with cataract surgery. Due to reasons related to study time and budget, only 398 (80%) of the 448 subjects who refused surgery were included in this study and were contacted in their homes to determine why they had refused cataract surgery. Of the 50 subjects who did not participate in the study, 33 (66%) were female and 8 (16%) were bilaterally blind. There were no differences in demographics and visual acuity between subjects who participated in the interview and those who did not. Free cataract surgery (at the nearest district hospital, which was 1 hour by road), free spectacles, free transportation and meals during the stay and cost-free follow-up at the next outreach camp were offered to all referred subjects.
Study Definitions Blindness was defined as presenting VA 56/60 in the better eye. Subjects with presenting VA 46/60, who improved vision with pinhole, were referred to a
146 V. Kovai et al. 1046 subjects attended 14 cataract screening camps
Vision screened by volunteer
Presenting vision ≤6/60 (n=492)
Presenting vision >6/60 (n=554)
Normal (n=294)
Cataract (n=492)
General eye disease (n=260)
38 subjects had complaints related to their eyes and wanted to meet medical doctor
Examination by ophthalmic officer
Referral to primary health center (n=298)
Referral to secondary eye care center (n=492)
15 days after referral, subjects were contacted
Refused surgery (n=448)
Accepted surgery (n=44)
398 study subjects contacted (326 unilaterally blind; 72 bilaterally blind); could not contact 50 subjects due to study logistics
FIGURE 1. Sample selection for determining reasons for cataract surgery refusal in Seethampeta Mandal, Andhra Pradesh.
government primary health center for further management. Subjects who had opacity of the crystalline lens in the pupillary area when seen with torchlight through the undilated pupil, and presented with VA 56/60 not improving with pinhole, were identified as patients with cataract. The phrase ‘‘general barriers to cataract surgery’’ refers to the reasons reported by the subjects for not seeking treatment despite being referred for surgery. The term ‘‘specific reasons’’ refers to the perceptions for non-compliance of those subjects who had perceived ‘‘no serious eye problem and can manage well with current vision.’’
Study Team and Data Collection Process The authors (VK, FS and BP) were involved in designing the study, preparation of questionnaires, and training the ophthalmic officer to collect data. Four local volunteers helped to organize the eye camps and one of these volunteers was trained briefly to measure distance vision. Subjects were invited to attend the eye camp sites for vision screening. One of the four trained volunteers measured the distance vision of subjects using a Snellen chart with an E optotype at a distance of 6 m. If the subject failed to identify the largest optotype, the distance to the chart Ophthalmic Epidemiology
Reasons for Refusing Cataract Surgery in a Tribal Area 147 was reduced by 1 m at a time. For those who were unable to read the chart at 1 m, finger counting was performed. The ophthalmic officer performed pinhole testing and eye anterior examination using a loupe, torch and ophthalmoscope without pupil dilatation. Subjects presenting with distance VA56/60, with lens opacification and no improvement with pinhole were considered to have cataract and were referred to the nearest government district hospital (up to 50 km away from the camp sites) for further treatment after counseling. Subjects presenting with other eye conditions, including refractive error, were referred to the nearest primary health center where patients could receive treatment for general eye problems under the supervision of a medical doctor, and had access to free spectacles from the district hospital. On the 16th day of the eye camp, the ophthalmic officer together with trained volunteers visited houses of referred patients to identify subjects who did not comply with the referral advice. Those who failed to seek cataract surgical services 15 days after referral were invited to participate in the study. After 1 day of training, a single investigator (ophthalmic officer) conducted the interviews (approximately 20 minutes for each participant) at the residence of the participants using two questionnaires: (1) The Andhra Pradesh Eye Disease Study (APEDS)3 standardized questionnaire for collecting general barriers to seeking cataract treatment among blind patients (presenting VA56/60), and; (2) A newly developed questionnaire used to assess specific reasons of those who felt they managed well despite having poor vision. In brief, the new questionnaire initially had a list of 18 items which were developed following focus group discussions comprising professionals with public health, optometry, ophthalmology and social science experience. The new questionnaire was translated into the local language and retranslated into English. A pilot study (for clarity, comprehension and content validity) was carried out using 50 subjects. Following the pilot, the questionnaire items were reduced to 14 and changes related to use of appropriate local language were made to suit the local context. The participant responses for the APEDS questionnaire and the newly developed questionnaire were recorded as: 0 = No, 1 = Yes, and 2 = most important response.
knowledge that cataract is treatable, and; (c) patients who sought treatment previously. Each outcome was analyzed separately. The co-variables adjusted for in the multiple logistic regression analysis were: age, sex, marital status, occupation, employment, family income and category of blindness. All the variables were introduced in the model simultaneously and none were optimized. Statistical significance was set at 5%. The odds ratios (ORs) with respective 95% confidence intervals (CIs) were reported for each factor level.
RESULTS Study Subjects The demographic distribution of study subjects is shown in Table 1. Of 398 study subjects, 326 (81.5%) were unilaterally blind and 72 (18.5%) were bilaterally blind. The mean age of subjects was 67.2 ± 8.2 years with an age range of 50–90 years, and 64.8% were female. Three-quarters of respondents were aged between 60 and 80 years. Two-thirds of respondents were hill area workers in agricultural employment, and 71.6% of subjects had a family income 51000 Indian rupees (INR) per month (US$20) Those who had noticed a decrease in vision comprised 71.7% (234/326) of those presenting as unilaterally blind and 95.8% (69/72) of those presenting as bilaterally blind. Similarly, 82.5% (269/326) of unilaterally blind subjects and 80.5% (58/72) of bilaterally blind subjects were aware that they had cataract. Of the total, 30.2% (100/326) of subjects with unilateral blindness and 4.16% (3/72) of subjects with bilateral blindness had sought treatment for their eye problem previously.
General Barriers for not Seeking Cataract Treatment Table 2 presents the general barriers perceived by the study subjects. The main reasons stated for not seeking cataract treatment by both unilaterally and bilaterally blind subjects were ‘‘able to see adequately’’ (79.1% and 69.4%, respectively), ‘‘did not have a serious problem’’ (4.9% and 6.9%, respectively) and ‘‘event of aging so need no treatment’’ (4.6% and 8.3%, respectively).
Statistical Analysis SPSS software version 16 (SPSS Inc, Chicago, IL, USA) was used for data analysis. The frequency distribution of subjects’ demographic characteristics and barriers (general and specific) were calculated. Multiple logistic regression analysis was applied to determine the association of three dependent variables, namely: (a) decreased vision noticed by patients; (b) patients’ !
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Specific Reasons for Stating ‘‘I Can See Well with Current Vision and do not have a Serious Problem’’ The specific reasons were obtained from 274 unilaterally blind and 55 bilaterally blind subjects who perceived that they did not have any serious problem
148 V. Kovai et al. TABLE 1. Demographic distribution of subjects from Seethampeta Mandal, Andhra Pradesh, including those who noticed a decrease in vision, those who perceived cataract can be treated, and those who sought treatment.
Variable Blindness
Unilateral Bilateral Age, years 50–59 60–69 70–79 80–89 09 Sex Male Female Occupation Labor work Cultivation on hilly areas Agriculture labor Others Main earner in the family Yes Semi No Family income range 5INR1000 INR1001– INR2500 INR2501– INR5000 INR5000 Total
Total (N = 398) n (%)
Noticed decrease in vision (N = 303) n (%)
Perception: cataract can be treated (N = 327) n (%)
Sought treatment for eye problem in the past (N = 103) n (%)
326 (81.9) 72 (18.0) 41 (10.3) 170 (42.7) 130 (32.7) 55 (13.8) 2 (0.5) 140 (35.2) 258 (64.8) 17 (4.3) 266 (66.8) 54 (13.6) 61 (15.3) 26 (6.5) 328 (82.4) 44 (11.1) 285 (71.6) 105 (26.4) 5 (1.3) 3 (0.8) 398
234 (71.8) 69 (95.8) 30 (73.7) 134 (78.8) 96 (73.8) 41 (74.5) 2 (100.0) 100 (71.4) 203 (78.6) 10 (58.8) 204 (76.6) 40 (74.0) 49 (80.3) 18 (69.2) 258 (78.6) 27 (61.3) 226 (79.2) 70 (66.6) 4 (80.0) 3 (100.0) 303
269 (82.5) 58 (80.6) 29 (70.7) 136 (80.0) 119 (91.5) 41 (74.5) 2 (100.0) 122 (87.1) 205 (79.4) 14 (82.3) 218 (81.9) 48 (88.8) 47 (77.0) 20 (76.9) 275 (83.8) 32 (72.7) 234 (82.1) 88 (83.8) 3 (60.0) 2 (66.6) 327
100 (30.7) 3 (4.2) 9 (21.9) 37 (21.7) 38 (29.2) 18 (32.7) 1 (50.0) 41 (29.2) 62 (24.0) 5 (29.4) 68 (25.5) 15 (27.7) 15 (24.5) 6 (23.0) 80 (24.3) 17 (38.6) 65 (22.8) 37 (35.2) 1 (20.0) 0 (0.0) 103
INR, Indian rupees
TABLE 2. General barriers to eye care for not seeking treatment among those unilaterally and bilaterally blind from cataract in Seethampeta Mandal, Andhra Pradesh (N = 398). General barrier 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
Dominant person in family, if other than the subject, did not feel the need for seeking health care Did not have a serious problem Able to see adequately Eye diseases/decrease in vision are natural with growing old and so do not need treatment Afraid that seeing someone for eye checkup would reveal vision loss, and therefore cause worry Did not know where to go for eye checkup Had to travel far for eye checkup No one willing to escort for eye checkup Family/harvest/business/other obligations prevent eye checkup Did not have money to pay for eye checkup Did not feel comfortable with the indigenous practitioner that had access to Did not feel comfortable with the homeopathic/ayurvedic/unani practitioner that had access to Did not feel comfortable with the eye doctor/general medical doctor that had access to Eye checkup not a priority because of other serious medical problems Would like eye checkup but other medical problems prevented going Other (specify)
or were able to see well enough. The five specific reasons selected by the unilaterally blind subjects (n = 274) comprised: ‘‘fear of loss of vision’’ in 112 subjects (40.8%), ‘‘busy with agricultural works/ opportunity cost’’ in 45 subjects (16.4%), ‘‘no support systems for escort and transportation’’ in 33 subjects
Unilateral blindness (N = 326) n (%)
Bilateral blindness (N = 72) n (%)
4 (1.2)
1 (1.3)
16 (4.9) 258 (79.1) 15 (4.6)
5 (6.9) 50 (69.4) 6 (8.3)
–
–
5 (1.5) 2 (0.6) 13 (3.9) 6 (1.8) 3 (0.9) – –
3 (4.1) 1 (1.3) 2 (2.7) 3 (4.1) 0 (0.0) – –
1 (0.3)
0 (0.0)
1 (0.3) 2 (0.6) –
0 (0.0) 1 (1.3) –
(12.0%), ‘‘no perceived need due to old age’’ in 21 subjects (7.6%) and ‘‘can’t bear expenses after surgery’’ for 19 subjects (6.9%). The five specific reasons given by the bilaterally blind subjects (n = 55) comprised: ‘‘fear of loss of vision’’ in 19 subjects (34.5%), ‘‘no support systems for Ophthalmic Epidemiology
Reasons for Refusing Cataract Surgery in a Tribal Area 149 escort and transportation’’ in 10 subjects (18.1%), ‘‘busy with agricultural works/opportunity cost’’ in nine subjects (16.3%), ‘‘no perceived need due to old age’’ in four subjects (7.2%), and ‘‘can’t bear expenses after surgery’’ in three subjects (5.4%).
Association of Demographic Variables with Dependent Variables The odds of noticing decreased vision were higher among those who were employed (OR 2.7, 95% CI 1.30–5.8; p50.01) and those patients whose family income was 5INR1000/month (OR 1.8, 95% CI 1.0– 3.0; p = 0.02). The odds of noticing decreased vision were lower among unilaterally blind subjects (OR 0.1, 95% CI 0.03–0.3; p50.01). There was no significant association with age, sex, marital status and occupation. The odds of awareness that cataract can be treated was lower among those who were younger than 60 years of age (OR 0.4, 95% CI 0.28–0.85; p = 0.01). There was no significant association with sex, marital status, occupation, earning status, income and status of blindness. The odds of seeking treatment were lower among those who were employed (OR 0.4, 95% CI 0.2–0.8; p = 0.01) and those patients whose family income was 5INR1000/month (OR 0.5, 95% CI 0.34–0.94; p = 0.02). The odds of seeking treatment were higher among subjects with unilateral blindness (OR 10.8, 95% CI 3.3–35.6; p 0.01). There was no significant association with age, sex, marital status and occupation.
DISCUSSION This study aimed to assess barriers to seeking treatment in individuals with cataract blindness in a tribal region of India; specifically in those who reported their vision as adequate. The majority of unilaterally blind (226/326) and almost all bilaterally blind (69/72) subjects referred for cataract surgery did not make any attempt to seek treatment despite noticing a
reduction in their vision and being aware that cataract is treatable (Table 1). This finding from tribal people in rural India is similar to recent literature which reports a significant proportion of people who received recommendations for cataract surgery from eye camps in rural India do not take up cataract surgery even when offered free of cost.12 Barrier studies from rural parts of India in 1981,11 1991,7 1995,14 1999,12 2004,13 20075,8 corroborate the present study’s findings that a majority of those identified as having an eye problem and who could benefit from treatment did not seek treatment. These reports demonstrated that the commonly cited barriers to cataract surgery include: no preference for surgery, cost, accessibility, and poor visual outcome. However, these reports do not provide evidence or explanation as to why many patients do not present for surgery even if eye care services are relatively accessible. In the present study, 84% of subjects with unilateral blindness (274/326) and 76% of subjects with bilateral blindness (55/72) had the perception that ‘‘they can see well and have no serious problem despite being referred for further treatment.’’ The five specific reasons (Table 3) behind this perception comprise: (1) fear (fear of facing bad experience similar to neighbor, fear of loss of vision and fear of surgery); (2) have to work/opportunity cost; (3) no support systems for escort and transportation; (4) dependency due to old age, and; (5) no money for post-operative expenses if they undergo surgery. The reasons cited are consistent with other reports from rural populations of India.5,8,12,14,19 However, each of these reasons stated requires a specific strategy to understand the decision-making process to accept cataract surgery. According to Anderson’s healthcare use model, predisposing characteristics, and enabling and need factors influence the decision-making of healthcare use.23 All the five factors above are a mix of predisposing, as well as enabling factors, at the individual level which influence the decisionmaking of use of healthcare services. The findings from this study allow us to conclude that these factors seem to be constraining the decision-making process in accepting cataract surgery and subjects in this
TABLE 3. Specific reasons perceived by those who did not comply with recommendations of cataract surgery, Seethampeta Mandal, Andhra Pradesh (N = 329). Specific reason 1 2 3 4 5 6 !
Fear (fear of facing bad experience similar to neighbor, fear of loss of vision and fear of surgery) Had to work/opportunity cost No support systems for escort and transportation Dependency due to old age No money for post-operative expenses if undergo surgery Other reason 2014 Informa Healthcare USA, Inc.
Unilateral blindness (N = 274) n (%)
Bilateral blindness (N = 55) n (%)
112 (40.8)
19 (34.5)
45 33 21 19 44
(16.4) (12.0) (7.6) (6.9) (16.3)
10 9 4 3 5
(18.1) (16.3) (7.2) (5.4) (18.5)
150 V. Kovai et al. study are therefore likely to live in denial of the need for cataract surgery despite reduced sight. Age and fear factors might be difficult to change but the other three factors can be managed effectively according to an Australian study in Indigenous communities.24 This study demonstrated that access to services for Indigenous people could be improved if eye care is delivered within culturally appropriate facilities. However, recruitment of local communitybased coordinators,24 availability of eye screening facilities and affordable spectacles within the Indigenous setting where eye care services are planned require constant monitoring and evaluation systems to ensure that there are no more unnecessary barriers to obtaining eye care interventions after receiving prescriptions. Such oversight is critical to improving uptake of eye care services.19,25–28 Besides age and fear, people with poverty and illiteracy have a lower uptake of health care services.15 For example, in this study, the odds of seeking cataract surgery were low among patients whose family income was 5INR1000/month (US$20) and those who were employed, despite the higher odds of noticing a decrease in vision (Table 4). A previous study that explored barriers to eye care among the visually impaired from the same region corroborates these findings.5 The majority of the tribal population living in rural areas are poor and usually busy with subsistent agricultural activities29 and thus likely to fear making a decision in favor of cataract surgery
even when they notice reduced vision.5 Thus, work pressure and low income in these categories of people were acting as disabling factors for acceptance of cataract surgery. Some reports of factors associated with healthcare use in rural India support these arguments.15,16 Scheduled Tribes living in rural areas are usually worse off, especially for educational attainment,30 and are usually deprived of the basic needs of life; facing chronic hunger or semi-starvation.29 There is a tremendous need for building good relationships between receivers and providers in order to improve health communication and trust in geographical settings in which the population has a distinct culture and language, and is facing conditions such as poverty, chronic hunger, low income, illiteracy and work pressure. This is even more important when the working age group have low odds of knowledge that a cataract problem can be treated (Table 4). Appropriate outreach services,19,21,25–28 integrated with primary, secondary and tertiary care could address this need in helping communities to receive convenient services with cost savings, and in increasing understanding by both the receivers and providers of the clinical and management issues; thus helping to minimize the barriers (because of fear and age factors) to use of health systems. The new 14-item questionnaire was able to provide clarity on specific reasons to state the perception ‘‘I can see well despite being blind due to cataract’’;
TABLE 4. Multivariable adjusted odds ratiosa for effect of demographic variables on (1) noticing decreased vision, (2) perception that cataract can be treated, and (3) seeking treatment, in cataract-affected subjects, Seethampeta Mandal, Andhra Pradesh.
Predictor
Noticing decreased vision, OR (95% CI)
p value
Cataract can be treated, OR (95% CI)
p value
Having sought treatment, OR (95% CI)
p value
Age, years 560 460
0.9 (0.53–1.5) 1
0.72
0.4 (0.28–0.85) 1
0.01b
0.6 (0.40–1.15) 1
0.15
Sex Male Female
0.6 (0.37–1.41) 1
0.13
1.3 (0.7–2.5) 1
0.35
1.2 (0.70–2.09) 1
0.48
Marital status Married Widow/widower
1.0 (0.6–1.7) 1
0.75
1.4 (0.7–2.5) 1
0.24
1.0 (0.6–1.7) 1
0.94
Occupation Labor work Cultivation on hilly areas
1.0 (0.60–1.7) 1
0.93
0.8 (0.45–1.47) 1
0.17
1.0 (0.5–1.7) 1
0.97
Employed Yes No
2.7 (1.3–5.8) 1
50.01b
1.7 (0.78–3.6) 1
0.91
0.4 (0.19–0.86) 1
0.01b
Family income 5INR1000 4INR1000 Unilateral blindness Bilateral blindness
1.8 (1.08–3.0) 1 0.1 (0.03–0.35) 1
1.03 (0.57–1.86) 1 1.1 (0.5–2.2) 1
0.69
0.5 (0.34–0.94) 1 11.0 (3.3–35.6) 1
0.02b
0.02b 50.01b
0.6
50.01b
a
Co-variables adjusted for: age, sex, marital status, occupation, employment, family income and category of blindness. Significant for p50.05 CI, confidence interval; INR, Indian rupees; OR, odds ratio b
Ophthalmic Epidemiology
Reasons for Refusing Cataract Surgery in a Tribal Area 151 however this needs to be validated further in future studies. The study had a few important limitations. First, referred patients were contacted 15 days after the cataract screening camps and thus the sample selection undertaken could suggest a selection bias. It is arguable that it is too early to comment that they did not comply with the advice after the period. While a longer time interval between screening and second contact would have been preferable, loss to follow up of subjects would mitigate against this approach. Second, researcher bias: The researcher might harbor unperceived bias due to his personal experience in working in such camps. However, since the content of the questionnaire was developed using focus group discussions, this limitation was probably minimized. Third, construct validity of the new questionnaire: The new questionnaire was not designed to understand patient barriers related to geographical remoteness, cultural appropriateness of services, poor doctor-patient communications, or inadequate communications between hospitals and remote communities. Future studies would be improved if these items are included in the questionnaires and the questionnaires validated using Rasch analysis. The high rate of refusal of cataract surgery in this study raises important areas to explore further in future studies: that results might have been distorted by the 2-week follow-up period, and; that most of those employed refused surgery suggesting that being employed is a factor linked to timing, ie taking time off work might not be convenient, especially if work is seasonal. In conclusion, in the present study, subjects who were employed and those with low income were more likely to refuse surgery, despite being aware of their poor vision. Understanding reasons for refusal is important in increasing acceptance of surgery and these issues need to be addressed prior to implementing the strategies to improve uptake of cataract treatment services in tribal areas.
ACKNOWLEDGMENTS It is noteworthy that this study was the Master of Community Eye Health thesis of the second author who would like to acknowledge the support of ICARE - LV Prasad Eye Institute, Hyderabad, India and School of Optometry and Vision Science of University of New South Wales, Sydney Australia; National programme for the control of Blindness, Government of Andhra Pradesh, India and Andhra Pradesh Right To Sight Society, Hyderabad, India. The authors are also thankful to all study subjects, internal reviewers of Brien Holden Vision Institute and specially acknowledge the technical support of !
2014 Informa Healthcare USA, Inc.
Dr Judith Flanagan for editing and reviewing this paper.
DECLARATION OF INTEREST The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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Ophthalmic Epidemiology
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