|Year : 2021 | Volume
| Issue : 1 | Page : 3-8
Quality of life in patients affected by age-related macular degeneration
Aratee C Palsule, Aditi A Kulkarni, Ketan V Jathar
Department of Ophthalmology, Deenanath Mangeshkar Hospital and Research Centre, Pune, Maharashtra, India
|Date of Submission||25-Nov-2019|
|Date of Decision||18-Jan-2020|
|Date of Acceptance||26-Feb-2020|
|Date of Web Publication||10-Apr-2021|
Aratee C Palsule
Department of Ophthalmology, Deenanath Mangeshkar Hospital and Research Centre, Pune - 411 004, Maharashtra
Source of Support: None, Conflict of Interest: None
Context: Age-related macular degeneration (ARMD) is an eye condition which results in loss of vision because of damage to the retina. ARMD affects central vision, and it shows association with psychological distress and depression. Aims: Our study aimed to evaluate the quality of life (QoL) in patients with ARMD and its association with best-corrected visual acuity (BCVA) and treatment. Subjects and Methods: A cross-sectional study including patients clinically diagnosed as neovascular ARMD (wet ARMD) and geographic atrophy (dry ARMD). Patients were classified into Group 1: Patients with dry ARMD, Group 2: Patients with wet ARMD not treated with anti-vascular endothelial growth factor (VEGF) injections, and Group 3: Patients with wet ARMD who had received at least 3 anti-VEGF injections. To assess the vision-related QoL, National Eye Institute Visual Functioning Questionnaire-25 (NEI VFQ-25) was used. Results: We included 60 patients, 20 in each group. There were 23 women and 37 men; with mean age of 78.2 ± 7.9 years. We observed significant difference in near activities (P = 0.03), distance activities (P = 0.002), and vision-specific social functioning (P = 0.001), when comparing VFQ-25 subdomain scores with patients with better eye BCVA. We found Group 3 had significantly more vision-specific role difficulties than Group 1 (41.87 ± 21.94 vs. 26.87 ± 25.73). We found Group 2 had significantly better vision-specific mental health (49.37 ± 19.8 vs. 35.31 ± 19.9) and lesser vision-specific dependency than Group 3 (57.08 ± 26.6 vs. 40.00 ± 26.7). Conclusions: Vision-specific mental health is better in untreated wet ARMD patients than those who have taken anti-VEGF injections in our study population.
Keywords: Age-related macular degeneration, quality of life, vision
|How to cite this article:|
Palsule AC, Kulkarni AA, Jathar KV. Quality of life in patients affected by age-related macular degeneration. J Clin Ophthalmol Res 2021;9:3-8
|How to cite this URL:|
Palsule AC, Kulkarni AA, Jathar KV. Quality of life in patients affected by age-related macular degeneration. J Clin Ophthalmol Res [serial online] 2021 [cited 2022 Jun 27];9:3-8. Available from: https://www.jcor.in/text.asp?2021/9/1/3/313481
Age-related macular degeneration (ARMD) is an eye condition which usually affects older adults and results in loss of vision in the center of the visual field because of damage to the central retina (the macula). It is one of the leading causes of vision impairment and blindness in the developed world., In India, overall prevalence of advanced ARMD was 1.4% as reported in the INDEYE study (2010). A recent hospital-based study by Kulkarni et al. shows that the proportion of overall ARMD was 1.38%, and proportion of age-related maculopathy and late ARMD was 1.14% and 0.24%, respectively.
ARMD affects the central vision necessary for reading, driving, watching television, recognizing faces, and many other daily life activities. Vision loss is associated with increased risk of falls. In addition, vision loss due to ARMD has been shown to be associated with depression and significant psychological distress similar to that of people with other chronic illnesses., Studies show that vision impairment compromises quality of life (QoL) and limits social interaction and independence., The current treatment strategies of ARMD (laser surgery, photodynamic therapy, and anti-VEFG drugs) can stabilize the vision but are unable to significantly reduce ARMD-related blindness.,, and it shows a considerable socio-economic burden on individuals and the health system.
QoL considerations are becoming progressively more important in all specialties of medicine, especially in the field of ophthalmology, because vision loss can have an intense impact on the QoL. Researchers have used a variety of instruments to measure QoL. The National Eye Institute Visual Function Questionnaire (NEI-VFQ) was used in several studies to measure patient reported outcomes of low vision care.,, These studies have been concentrated mostly in the United States. In developing countries, such as India, with limited resources, it is important to assess the QoL in patients affected by ARMD and its association with vision, health, and demographic variables as perceived by the patients. In the present study, we evaluated the vision-related QoL in patients affected by ARMD and compared QoL in treated and untreated ARMD patients.
| Subjects and Methods|| |
A cross-sectional study was conducted using NEI VFQ-25, which was applied as an interview. We enrolled patients age ≥50 years and clinically diagnosed as a neovascular ARMD (wet ARMD) (40 patients) and geographic atrophy (dry ARMD) (20 patients) in our institute. Principal cause of low vision of these patients was attributed to ARMD. The patients with a history of eye disease besides ARMD which might compromise the best corrected vision acuity (BCVA) (i.e., amblyopia, uncontrolled glaucoma with intraocular pressure (IOP) >30 mmHg, optic neuropathy, diabetic macular edema, diabetic retinopathy, uveitis, clinical signs of chorioditis, venous occlusion, etc.,) were excluded.
Clinical diagnosis of ARMD and/or geographic atrophy (dry ARMD) was graded with the AREDS classification of AMD. The participants were classified into three groups according to the clinical diagnosis of ARMD. Group 1 included individuals with geographic atrophy (dry ARMD). Group 2 included individuals with neovascular ARMD (wet ARMD) who had not been treated with intravitreal anti-vascular endothelial growth factor (VEGF) injections at the time of interview (the administration of questionnaire). Group 3 included individuals with Neovascular ARMD (wet ARMD) who had received at least 3 anti-VEGF injections.
The National Eye Institute VFQ-25 was used to assess the QoL. Its validity and reliability in regional language have been proven. The questionnaire was administered by trained data collector in Hindi and Marathi language. The questionnaire consists of 25 questions, grouped into 12 subdomains including one or more questions each. The subdomains include general health, general vision, and ocular pain, near activities, far activities, social functioning, mental health, role difficulties, dependence, driving difficulties, color vision, and peripheral vision. The score ranges from 0 to 100, where 0 represents severe QoL impairment and 100, better QoL. The score for each subdomain was calculated by a simple mean of the corresponding answers; the higher the score, the better the respondent's QoL. In the present study, the subdomain “driving difficulties” was not addressed since it was not a part of daily activities of the studied sample.
The sociodemographic and clinical data of all participants were collected at the time of interview. We recorded clinical parameters such as BCVA, pin hole vision, IOP, cornea, pupil, lens, vitreous, retina, and previous records of optical coherence tomography, fundus fluorescein angiography, perimetry, and other if any. The vision was recorded using the Snellen's visual acuity chart. Diminution of vision was graded according to recent recommendation by Dandona and Dandona We defined BCVA equal to or better than 6/18 as mild or no visual impairment, worse than 6/18 and equal to or better than 6/60 as moderate visual impairment, worse than 6/60 as severe visual impairment. This study was approved by the ethics committee of our institute.
Data were tabulated into excel sheet and analysis was performed using theIBM SPSS Statistics for Windows, version 20 (IBM Corp., Armonk, N.Y., USA) for Windows. The description of the data was done in the form of mean ± standard deviation for quantitative data while in the form of proportion for qualitative (categorical) data. The association between categorical variables was assessed by Chi-square. The level of significance set at P < 0.05 as significant. The differences in means of continuous variables were examined by Mann–Whitney U-test. Significance of the differences between more than two group's means was tested using Kruskal–Wallis test.
| Results|| |
In the present study, we included 60 patients, 20 in each group. There were 23 (38.33%) women and 37 (61.66%) men; with mean age of 78.2 ± 7.9 years. The sociodemographic characteristics are shown in [Table 1]. We observed no statistical significant difference in better eye as well as in worse eye BCVA within groups [Table 2].
|Table 1: Sociodemographic characteristics of patients with age related macular degeneration|
Click here to view
|Table 2: Distribution of better eye and worse eye bestcorrected visual acuity|
Click here to view
NEI VFQ-25 subdomain scores for near activities (P = 0.03), distance activities (P = 0.002), and vision-specific social functioning (P = 0.001) were significantly correlated with better eye BCVA, while there were no significant differences in remaining subdomains. Lowest mean values of scores indicate that vision-related QoL in patients with severe vision loss is poorer than patients with mild-to-moderate vision loss [Table 3].
|Table 3: Comparison of the National Eye Institute Visual Function Questionnaire . 25 subdomain scores based on the responses of patients with better eye best-corrected visual acuity|
Click here to view
We found a significant (P = 0.05) difference in mean value of vision-specific role difficulties among patients with dry ARMD (41.87 ± 21.94) and wet ARMD with treatment (26.87 ± 25.73). We found that patients with wet ARMD who had taken treatment had significantly more vision-specific role difficulties than patients with dry ARMD.
We found that patients with wet ARMD without treatment had significantly better vision-specific mental health (49.37 ± 19.8 vs. 35.31 ± 19.9) and lesser vision-specific dependency than wet ARMD with treatment (57.08 ± 26.6 vs. 40.00 ± 26.7) when comparing VFQ-25 subdomain scores [Table 4].
|Table 4: Comparison of the National Eye Institute Visual Function Questionnaire - 25 sub domain scores based on the responses of patients with age related macular degeneration between wet age related macular degeneration with treatment and Wet age related macular degeneration without treatment (n=20)|
Click here to view
When the responses of patients with dry ARMD and wet ARMD without treatment were compared, no significant difference was found in any NEI VFQ-25 sub domains.
After comparing unilateral and bilateral cases of wet ARMD, significant difference was found in NEI VFQ-25 subdomain scores for near activities (P = 0.048), distance activities (P = 0.006), vision-specific social functioning (P = 0.044), and peripheral vision (P = 0.019). It indicates that patients with unilateral disease have better QoL than patients with bilateral disease [Table 5]. There was no significant difference in number of patients with unilateral or bilateral disease across the groups [Table 1].
|Table 5: Comparison of the National Eye Institute Visual Function Questionnaire - 25 sub domain scores based on the responses of patients with age-related macular degeneration between unilateral and bilateral diseases within wet age-related macular degeneration patents (n=40)|
Click here to view
| Discussion|| |
QoL is defined by the World health organization as the individual's perception of position in life in the context of culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. The subjective perception of QoL will vary in different societies and culture. The measure of the visual health is typically considered with clinical indicators such as visual acuity and contrast sensitivity. In India, the life expectancy is increasing, the proportion of overall ARMD was 1.38% (95% confidence interval 1.21–1.55). ARMD patients experience various visual problems that affect their mental health and QoL. ARMD is known to reduce the QoL comparable to other major illnesses such as cancer and stroke.,
The NEI VFQ-25 is one of the most widely used questionnaires; this instrument has been used as prespecified endpoints in clinical trials. It is an instrument for the psychometric measurement of an individual's QoL that is used to assess patients with ocular disease leading to reduced vision.,
There was no statistically significant difference in the visual acuity of the patients in three groups. In the present study, various subdomain analysis of QoL using NEI VFQ-25 showed significant association with the degree of vision loss. Vision-related near activities, distance activities, and vision-specific social functioning were significantly better in patients having moderate vision loss than severe vision loss. This is in keeping with the results of the study by Orr et al. Literature has shown that the consequences of visual loss from AMD mainly affect the patients' mental health.,,
A study by Williams et al. had found that patients who were blind in one eye were significantly more distressed than those who were blind in both eyes. The authors suggest that this may be due to the uncertainty surrounding future vision loss in patients who were blind in one eye and that patients who were blind in both eyes may have a greater acceptance of their condition. Our findings are contradictory to this; we found that in total patients with wet ARMD those with unilateral disease had better QoL than patients with bilateral disease in NEI VFQ-25 subdomain scores for near activities, distance activities, vision-specific social functioning, and peripheral vision. This is in keeping with study by Marback et al. has stated that QoL is more affected by bilateral as compared to unilateral disease.
The currently available treatment option is intravitreal anti-VEGF injections for the wet ARMD. Literature shows that the majority of cases of wet ARMD, benefit from anti-VEGF therapies, with VA improvement or stabilization in almost 90% of patients in the main clinical trials,, and in real-life practice, with more mitigated VA outcomes depending on the treatment and follow-up protocols., Both the treatment and follow-up of patients presently represent a major burden that is likely to have an impact on QoL. It involves multiple hospital visits and financial burden to the family. Most of the patients affected by the disease in this age group are retired and usually like to do activities that require good eyesight such as reading, watching TV, playing cards, and sewing. This may be reason why poor vision leads to poor QoL.
There was no statistically significant difference in the visual acuity of the patients or laterality of the disease in three groups. The subdomains of near activities, distance activities, and vision-specific social functioning were significantly affected in patients with severe vision loss as compared to those with moderate loss and in patients with bilateral disease. The subdomains of vision-specific mental health and vision-specific dependency are worse in patients undergoing treatment as compared to the untreated wet ARMD. This is suggestive that different subdomains of QoL are affected by severity of vision loss or laterality of disease, and the treatment affects different subdomains.
In the present study, we found, that vision-specific mental health and vision-specific dependency were poorer in patients undergoing treatment for wet ARMD than those without treatment. Another study by Varma et al. showed similar results. The treatment involves repeated visits to the hospital for which the patient needs to depend on their family. The treatment also poses a considerable financial burden to the family. Patients opt for treatment with high expectation of vision improvement which is not met after treatment. All this may be adding to the reduced vision-specific mental health and increased dependence. There is no significant difference found in various QoL subdomains of NEI VFQ-25 apart from mental health and dependency among treated and untreated wet ARMD patients.
The philosophy of life and approach of the elderly toward various diseases and treatment offered at old age are different from the developed countries. Unlike western countries, the cultural norm in India is for the children to take care of their old parents. The concern of the elderly in India about financially burdening the family is common. This is because of out-of-pocket expenditure and lack of insurance in our country.
An important limitation of this study was lack of paired comparison, the QoL before and after treatment was not compared in the same patient. The sample size is small, and the patients are from similar socioeconomic and cultural background.
ARMD affects the QoL of the elderly, and further larger multi-centric studies are required to assess the impact of treatment for ARMD on the QoL in the real life scenario. In addition, more studies should be carried on the prevention of mental problems, such as depression in the elderly, and should help patient in dealing with the limitation caused by the disease.
| Conclusions|| |
Vision-specific mental health is better in untreated wet ARMD patients than those who have taken anti-VEGA injections in our study population. Patients with worse visual acuity or the ones diagnosed with bilateral disease had worse QoL.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Congdon N, O'Colmain B, Klaver CC, Klein R, Muñoz B, Friedman DS, et al
. Causes and prevalence of visual impairment among adults in the United States. Arch Ophthalmol 2004;122:477-85.
Quigley HA, Broman AT. The number of people with glaucoma worldwide in 2010 and 2020. Br J Ophthalmol 2006;90:262-7.
Krishnan T, Ravindran RD, Murthy GV, Vashist P, Fitzpatrick KE, Thulasiraj RD, et al
. Prevalence of early and late age-related macular degeneration in India: The INDEYE study. Invest Ophthalmol Vis Sci 2010;51:701-7.
Kulkarni SR, Aghashe SR, Khandekar RB, Deshpande MD. Prevalence and determinants of age-related macular degeneration in the 50 years and older population: A hospital based study in Maharashtra, India. Indian J Ophthalmol 2013;61:196-201.
] [Full text]
Ivers RQ, Cumming RG, Mitchell P, Attebo K. Visual impairment and falls in older adults: The Blue Mountains Eye Study. J Am Geriatr Soc 1998;46:58-64.
Rovner BW, Casten RJ, Tasman WS. Effect of depression on vision function in age-related macular degeneration. Arch Ophthalmol 2002;120:1041-4.
Williams RA, Brody BL, Thomas RG, Kaplan RM, Brown SI. The psychosocial impact of macular degeneration. Arch Ophthalmol 1998;116:514-20.
Klein BE, Klein R, Lee KE, Cruickshanks KJ. Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology 1998;105:160-4.
Klein BE, Moss SE, Klein R, Lee KE, Cruickshanks KJ. Associations of visual function with physical outcomes and limitations 5 years later in an older population: The Beaver Dam eye study. Ophthalmology 2003;110:644-50.
Ciulla TA, Danis RP, Harris A. Age-related macular degeneration: A review of experimental treatments. Surv Ophthalmol 1998;43:134-46.
Leibowitz HM, Krueger DE, Maunder LR, Milton RC, Kini MM, Kahn HA, et al
. The Framingham Eye Study monograph: An ophthalmological and epidemiological study of cataract, glaucoma, diabetic retinopathy, macular degeneration, and visual acuity in a general population of 2631 adults, 1973-1975. Surv Ophthalmol 1980;24:335-610.
Gragoudas ES, Adamis AP, Cunningham ET Jr., Feinsod M, Guyer DR, VEGF Inhibition Study in Ocular Neovascularization Clinical Trial Group. Pegaptanib for neovascular age-related macular degeneration. N Engl J Med 2004;351:2805-16.
Carabellese C, Appollonio I, Rozzini R, Bianchetti A, Frisoni GB, Frattola L, et al
. Sensory impairment and quality of life in a community elderly population. J Am Geriatr Soc 1993;41:401-7.
Mangione CM, Berry S, Spritzer K, Janz NK, Klein R, Owsley C, et al
. Identifying the content area for the 51-item National Eye Institute Visual Function Questionnaire: Results from focus groups with visually impaired persons. Arch Ophthalmol 1998;116:227-33.
Mangione CM, Lee PP, Pitts J, Gutierrez P, Berry S, Hays RD. Psychometric properties of the National Eye Institute Visual Function Questionnaire (NEI-VFQ). NEI-VFQ Field Test Investigators. Arch Ophthalmol 1998;116:1496-504.
Mangione CM, Lee PP, Gutierrez PR, Spritzer K, Berry S, Hays RD, et al
. Development of the 25-item National Eye Institute Visual Function Questionnaire. Arch Ophthalmol 2001;119:1050-8.
Age-Related Eye Disease Study Research Group. The Age-Related Eye Disease Study system for classifying age-related macular degeneration from stereoscopic color fundus photographs: The Age-Related Eye Disease Study Report Number 6. Am J Ophthalmol 2001;132:668-81.
Dandona L, Dandona R. Revision of visual impairment definitions in the International Statistical Classification of Diseases. BMC Med 2006;4:7.
Dussán Torres GA. Health-related quality of life on age-related macular degeneration patients. Cien Tecnol Salud Vis Ocul 2017;15:27-35.
Marella M, Pesudovs K, Keeffe JE, O'Connor PM, Rees G, Lamoureux EL. The psychometric validity of the NEI VFQ-25 for use in a low-vision population. Invest Ophthalmol Vis Sci 2010;51:2878-84.
Brody BL, Gamst AC, Williams RA, Smith AR, Lau PW, Dolnak D, et al
. Depression, visual acuity, comorbidity, and disability associated with age-related macular degeneration. Ophthalmology 2001;108:1893-900.
Cahill MT, Banks AD, Stinnett SS, Toth CA. Vision-related quality of life in patients with bilateral severe age-related macular degeneration. Ophthalmology 2005;112:152-8.
Orr P, Rentz AM, Margolis MK, Revicki DA, Dolan CM, Colman S, et al
. Validation of the National Eye Institute Visual Function Questionnaire-25 (NEI VFQ-25) in age-related macular degeneration. Invest Ophthalmol Vis Sci 2011;52:3354-9.
Varma R, Wu J, Chong K, Azen SP, Hays RD, Los Angeles Latino Eye Study Group. Impact of severity and bilaterality of visual impairment on health-related quality of life. Ophthalmology 2006;113:1846-53.
Marback RF, Maia OO Jr., Morais FB, Takahashi WY. Quality of life in patients with age-related macular degeneration with monocular and binocular legal blindness. Clinics (Sao Paulo) 2007;62:573-8.
Prinja S, Bahuguna P, Gupta I, Chowdhury S, Trivedi M. Role of insurance in determining utilization of healthcare and financial risk protection in India. PLoS One 2019;14:e0211793.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]