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By 2020, 79.6 million people worldwide will have either open-angle or angle-closure glaucoma and 11.2 million will be bilaterally blind (Quigley & Broman 2006). Around 87% of visually impaired people live in developing countries (Abba, 2009), where eye health care provision is desperately inadequate. Glaucoma accounts for 6% of all cases of blindness in Sri Lanka (Oduntan, 2005) However, the actual morbidity figures could be much higher, since no proper study has yet been conducted in this country. Therefore, the purpose of this study is to identify the influences of glaucoma on the quality of life while identifying the patients’ knowledge and attitudes regarding the disease, examining the problems and difficulties faced by them and assessing how an individual adapts to life with glaucoma.
L. A. A. R. Saranasekara1, G. W. I. N. Kulathunga2, N. R. M. Nelumdeniya3,
and B. S. S. De Silva4
1Medical Centre, Provincial Council Complex, Rathnapura
2National Hospital of Sri Lanka
3,4Department of Health Sciences, The Open University of Sri Lanka
Glaucoma is a group of progressive optic neuropathies that lead to severe restriction of the
visual field and irreversible blindness which subsequently reduces the Quality Of Life (QOL)
(Nelson et al., 2003). QOL is an indicator of a person’s overall wellbeing which includes
dimensions of physical and mental health, social functioning and independence. In simple
terms; it is the ability to pursue a happy and fulfilled life (Skalicky & Goldberg, 2013).
Although the components of a good QOL differ among individuals and societies, vision has
consistently been demonstrated as one of its key determinants (Speath, Walt & Keener, 2006).
A sizable and growing body of evidence clearly shows that patients value their vision more
highly than most ophthalmologists realized (Sprta, Kotecha & Visvanathan, 2008).
By 2020, 79.6 million people worldwide will have either open-angle or angle-closure
glaucoma and 11.2 million will be bilaterally blind (Quigley & Broman 2006). Around 87%
of visually impaired people live in developing countries (Abba, 2009), where eye health care
provision is desperately inadequate. Glaucoma accounts for 6% of all cases of blindness in Sri
Lanka (Oduntan, 2005) However, the actual morbidity figures could be much higher, since no
proper study has yet been conducted in this country. Therefore, the purpose of this study is to
identify the influences of glaucoma on the quality of life while identifying the patients’
knowledge and attitudes regarding the disease, examining the problems and difficulties faced
by them and assessing how an individual adapts to life with glaucoma.
Qualitative approach and phenomenological design were used for the study.
Phenomenological design is recommended to identify how people actually perceived or sense
a situation. In the human sphere, this normally translates into gathering ‘deep’ information
and perceptions through inductive, qualitative methods such as interviews, discussions and
participant observation, and representing it from the perspective of the research participant(s).
Ethical approval was granted from the ethical review committee of the National Hospital of
Sri Lanka and the study was undertaken for 12 purposively selected patients who were
medically fit and willing to participate voluntarily. At the time of each interview, written and
verbal explanations were provided and consent forms were obtained. All patients were
assured that their identities would not be disclosed anywhere. Each interview was tape
recorded and took approximately 30 minutes. An interview theme list was used to elicit
information and gathered data were analyzed based on thematic analysis. Knowledge about
the disease, physical disabilities and psychological impact of the disease immmerged as
All the selected patients were over 40 years of age and from urban areas. Glaucoma not only
affects the visual function but also has a burden on overall health of the patient and his/her
4Correspondence should be addressed to B.S.S De Silva, The Open University of Sri Lanka
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quality of life. This influence begins on the date of diagnosis of the disease, initially due to
the patient’s fear of blindness and subsequently due to the development of the disease which
involves a progressive reduction of daily activities and loss of self-confidence. Knowledge
deficit, physical impairment and unsatisfying daily life were found to impair the QOL of
glaucoma patients.
The immediate feelings of most of the patients on hearing about glaucoma, were that of fear,
disappointment and helplessness. Such negative perceptions were more frequent among
patients above 50 years of age. That is basically due to the lack of awareness and knowledge
deficiency about the disease. These psychological influences of having glaucoma were similar
to the findings of the study in United States of America (Spaeth & Birbilis 1991). As stated by
patient P2,
…..“I did not know anything about glaucoma before coming to the clinic. I was afraid and
stressed with the diagnosis and felt very sorry about myself when the doctors say condition is
controllable if it was diagnosed early. Every day I feel guilty about myself because if I have
gone for treatments early my vision would have better than now.”….patient P2
A lack of understanding about the disease was the primary cause for delay in seeking
treatment, resulting in the condition being worsened. Some people heard the word
“glaucoma” for the first time at the diagnosis. This clearly showed that knowledge of the
disease was lacking. Similar results were highlighted by Attebo in New Zealand
and Australia. In order to increase the general awareness, it is required to perform education
sessions not only at the clinic but even at the Out Patient Department (OPD). As stated by
Spaeth (1997), improved understanding would help the patients to better manage their
disease. Even a brief education program could improve levels of knowledge of glaucoma, but
according to Kim, patient education must be repeated to have the desired effect.
The physical impairments experienced by most patients were inability to read, drive, cross the
road and climb staircases.. Patients with bilateral vision loss experienced more severe
difficulties than others. They could not engage in their preferred daily tasks as before. One
patient expressed concern about reading.
……“I am facing too many difficulties during glaucoma. Even I can’t read the headline of a
newspaper. For that simple thing now I have to depend on someone else, when everybody
busy with their own works I can’t force them to do that for me. It is difficult for me to enjoy my
day to day activities since reading newspaper was one of my favorite hobbies.”…patient p7
The elderly enjoy reading, since it gives relaxation to their mind. However, many patients
experienced difficulty in reading even in the mild stage of glaucoma. This finding was further
supported as people with glaucoma complain about difficulty in reading throughout the course
of the disease (Nelson, Aspinall, & O’Brien, 1999). Loss of vision is a major cause of activity
limitation among the elderly. Physical activities including walking are important to maintain
good health in old age, but the vision loss caused by glaucoma severely interferes with this
The psychological impact of loss of vision cannot be ignored. Most patients are unable to
work on their own and have become dependent on others. Some feel dejected and have given
up on life. Some try their best to do things for themselves, even though they are unable to, so
as not to be a burden on their families. Loss of independence is always associated with
feelings of helplessness and fear of going blind. These findings were further supported by a
study done in China (Wu 2010). One patient was highly frustrated about his life.
…. “I was affected by this disease in my late fifties. Now I am having difficulty to do works on
my own. Even to go here to there I have to take help from others. One day they will be fed up
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of helping me. No one likes to do the same thing thousand times. I am thinking that I am a
fully dependent patient. Near future I’ll be blind. It is better to die than live”….patient p5
In contrast, a minority of patients manage to live with the disease with the help of family
members. Adjustment to life with glaucoma helps to maintain daily routine with minimum
problems, but family support plays a vital role as stated by patient P9,
…..“It was too difficult to adjust the life earlier. Just now I am gradually getting used to living
with the disease. Sometimes my family helps me to do the things that I cannot do for myself.
Actually my daughter totally re arranged the furniture setup of my house. Earlier my room
was upstairs but now I’m living downstairs and no need to take a risk of climbing
staircase”…..patient p9
These findings were further supported by a similar study done in China (Wu 2010).
Double-checking an object’s position, improving household lighting, avoiding staying out in
the dark, and wearing hats outdoors to reduce the lighting difference will help to manage the
impact of the disease in day to day life (Wu 2010). Patients need considerable care and
attention and the support of others.
This study offers a better understanding of the life with glaucoma, a condition that people do
not show much concern for until they they are affected by it. The quality of life is severely
affected byphysical and mental impairments caused by the disease. However, the findings
revealed that knowledge about glaucoma was lacking and so early diagnosis was limited.
Frequent problems related to decreased vision were identified such as reading, walking on
stairs and crossing roads. Difficulties with these activities were more often reported by the
older patients. Although a few patients adjusted and were able to cope with daily activities
with the disease, others were not fully adjusted.
Continuous education about the disease to both patients and public is recommended since
early diagnosis provides more control of the disease with the use of medication. Knowledge
and information regarding the disease would be useful in several aspects including
customized disease management and promotion of alterations regarding patients’ daily living
and safety. Furthermore, arrangements should be made to give patients the appropriate
emotional and physical support from family members. Care takers also should be well
informed about the disease along with efficient patient management.
Abba, G. (2009). Prevalence of Glaucoma in Nigeria. The Internet Journal of Epidemiology. 9
Spratt, A., Aachal, K. and Ananth, V.(2008). Journal of current glaucoma practice. 2(1), 39-
Attebo, K., Mitchell, P., Cumming, R., & Smith W. (1997). Knowledge and beliefs about
common eye diseases. Australian and New Zealand Journal of Ophthalmology.25: 283-287.
Kim, S., Stewart, J.F.G., Emond, M.J., Reynolds, A.C., Leen, M.M., & Mills RP. (1997). The
effect of a brief education program on glaucoma patients. Journal of Glaucoma.6: 146–151.
Nelson, P., Aspinall, P. & O’Brien, C. (1999). Patients’ perception of visual impairment in
glaucoma: a pilot study. British Journal of Ophthalmology. 83(5): 546–552.
Nelson, P., Aspinall, P., Papasouliotis, O., Worton, B. & O’Brien, C. (2003). Quality of life in
ISSN 2012-9912 © 2014
Annual Academic Sessions - 2014
The Open University of Sri Lanka
Page 165
glaucoma and its relationship with visual function. Journal of Glaucoma 12(2): 139–150.
Oduntan, A.O. (2005). Prevalence and causes of low vision and blindnessworld wide. The
South African Optometrist. 64 (2): 44 − 54.
Wu, P.X., Guo, W.I., Xia, H.O., Lu, H.J.& Xi, S.X. (2011). Patients’ experience of living with
glaucoma: a phenomenological study. Journal of Advanced Nursing.67 (4), 800–810.
Quigley, H.A. & Broman A.T. (2006).The number of people with glaucoma worldwide in
2010 and 2020. Br J Ophthalmology.90: 262-267.
Skalicky, S., & Goldberg, I. (2013). Quality of Life in Glaucoma Patients.US Ophthalmic
Review. 6(1):6–9.
Speath, G.L. & Birbilis, E.P. (1991).The effect of Glaucoma and treatment of Glaucoma on
the quality of life. Glaucoma update IV:206-207.
Spaeth, G.L. (1997). Patient self-management skills influence the course of glaucoma.
American Academy of Ophthalmology.104: 1065–1066.
Spaeth, G. Walt, J. & Keener, J. (2006).Evaluation of quality of life for patients with
glaucoma. American Journal of Ophthalmology. 141(1): S3–S14.
Appreciation should goes to the all the patients, members of the ethical review committee and
to health care professionals in clinics who gave optimum support for the success of this
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ResearchGate has not been able to resolve any citations for this publication.
Full-text available
A recent review of the causes and prevalence of low vision and blindness world wide is lack-ing. Such review is important for highlighting the causes and prevalence of visual impairment in the different parts of the world. Also, it is important in providing information on the types and magnitude of eye care programs needed in different parts of the world. In this article, the causes and prevalence of low vision and blind-ness in different parts of the world are reviewed and the socio-economic and psychological implications are briefly discussed. The review is based on an extensive review of the litera-ture using computer data bases combined with review of available national, regional and inter-national journals. Low vision and blindness are more prevalent in the developing countries than in the developed ones. Generally, the causes and prevalence of the conditions vary widely in different parts of the world and even within the same country. World wide, cataract is the most common cause of blindness and low vision among adults and elderly. Infectious diseases such as trachoma and onchocerciasis result-ing in low vision and blindness are peculiar to Africa, Asia and South America. Hereditary and congenital conditions are the most common causes of low vision and blindness among chil-dren worldwide.
Full-text available
There is a paucity of useful information on the level of visual disability suffered by glaucoma patients. The aims of this study were to determine and rank the frequency of self reported visual disability in daily tasks performed by glaucoma patients; to examine the interrelation between disabilities using factor analysis; to study the relation between perceived visual difficulty and a measure of the severity of visual field loss; to develop a glaucoma specific subgroup of questions; and examine the validity and reliability of this subgroup of questions. 63 glaucoma patients completed a questionnaire containing 62 questions covering 10 broad aspects of daily life activities using a five point answer scale. Patients were classified into three groups as having mild, moderate, and severe field loss on the basis of the perimetric results. The relation between a measure of the severity of visual field loss and subjective visual disability in the three groups was examined. Using factor analysis, the most frequently reported problems were grouped into the following four categories: outdoor mobility, glare and lighting conditions and activities demanding functional peripheral vision, household tasks, and personal care. These four factors accounted for 72% of the variability in the patients' questionnaire responses. With increasing severity of binocular visual field loss there was an increase in the number of self reported visual problems. A loss of confidence in performing some routine daily tasks tended to precede self reported specific visual disabilities. The factor "glare and lighting and activities demanding functional peripheral vision" was found to have a significant relation with a measure of visual field loss and was used to create a glaucoma specific subset of questions. Cronbach's alpha showed a high degree of reliability and internal consistency (alpha =0.96) in this glaucoma specific subset of questions. Furthermore, the validity of this new subset of questions was shown to be significant (r=0.037, p<0.05) for the correlation between a measure of the severity of binocular visual field loss and the mean score of the variables used in the glaucoma specific subgroup of questions. Outcome measures and quality of life issues need to be addressed in glaucoma. This pilot study identified common problems encountered by patients which at the present time are not assessed in routine glaucoma care. It also identified a subgroup of questions that seems to be specific for glaucoma. Further research is required if a significant impact on the quality of life of glaucoma patients is to be achieved.
The effect of glaucoma on visual field, contrast sensitivity and other measures of visual function has been extensively studies. The complications of surgical therapy for glaucoma and their effect on visual function have also been investigated and reported. The side effects caused by medications utilized to treat glaucoma have been noted, though their diversity and frequency have not been fully reported or understood. But the effect of glaucoma on the patient’s quality of life has not been investigated.
Glaucoma affects the quality of life (QoL) of millions of people. Patients with glaucoma have a reduced QoL in early stage disease, which worsens as the disease progresses. Reduced visual function is the main determinant of poor QoL in glaucoma, however ocular surface discomfort, psychological factors and social constraints contribute to the burden of disease. The assessment of QoL in glaucoma is important in clinical practice to assessing a patient’s wellbeing, visual function and level of satisfaction with their care. It can be used to make important therapeutic decisions and allow clinician and patient to share common, realistic goals leading to better treatment outcomes. QoL assessment is increasingly important in clinical research. Various tools have been used to assess QoL in glaucoma, including general health-related questionnaires, vision-specific questionnaires, glaucoma-specific questionnaires, utility value assessments and objective visual function assessment. These tools are summarised and critically appraised in this article.
To explore the life experiences of those living with glaucoma and describe their strategies to deal with the consequences of this disorder. Glaucoma, the second most common cause of worldwide blindness, often imposes limitations on the daily functions of its victims, thus resulting in a decline in their quality of life and high costs in healthcare. A hermeneutical phenomenological research approach was adopted. Fourteen people with glaucoma were selected for in-depth interviews, and another ten were interviewed in two focus groups. Participants were recruited from a specialized eye hospital in Shanghai. The data were collected from July to September 2009. An interpretive analysis of the data was performed. The core theme was identified while interpreting the data on the patients' life experiences as 'learning to living with glaucoma' by one of our participants. The meaning of this is demonstrated in four interwoven themes: (1) seeking support; (2) coping with everyday tasks; (3) living with future uncertainties; and (4) adapting to the declined quality of life. This paper provides an insight into the living experiences of the patients with glaucoma using 1-on-1 and focus-group interviews, suggesting that the latter can also offer a means of phenomenological inquiry. We found that those with glaucoma can experience uncertainty surrounding treatment, illness prognosis and family members' risk status. In addition, the Chinese culture can influence the patients' strategies of maintaining a healthy lifestyle. In helping those with glaucoma considerations should be taken towards the feelings of future uncertainty that may develop.
To assess our patients' knowledge of glaucoma and to measure the effect of a brief education program on their understanding of glaucoma. Patients attending glaucoma clinics at a university and a Veterans' Affairs hospital were randomized into two groups: "exposed" and "unexposed" to a simple education program of a video and brochures. Glaucoma knowledge was assessed twice by an oral questionnaire, at 2 weeks and 6 months after randomization plus or minus education. Younger patients and those with more years of formal schooling knew more about glaucoma. Two weeks after the education program, the exposed group performed significantly better than did the unexposed group. Analysis of the results showed benefit from both brochures and video. This effect of education was not seen at retesting 6 months later. Older patients and those with less formal education know less about glaucoma. A brief, simple education program can significantly improve levels of knowledge about glaucoma, even in a relatively well-informed population. However, patient education must be repeated to maintain a useful effect.
To ascertain the level of knowledge of common causes of blindness in an adult Australian population and to relate this to use of eye care services. A population-based study of common eye diseases in an urban population aged 49 years or older was conducted. The questions were concerned with the awareness and knowledge of and the ability to describe three common eye diseases, namely cataract, glaucoma and age-related macular degeneration (AMD). Awareness of cataract (98%) and glaucoma (93%) were high in this population, but awareness of AMD was low (20%). Among people who were aware of the target eye disease, only 29% showed some knowledge of glaucoma, 26% showed some knowledge of AMD and 20% showed some knowledge of cataract; this was also low in people who had previous eye treatment, such as cataract surgery. Knowledge was related to education level, occupational prestige and knowledge of other eye diseases. After excluding people with a previous eye disease diagnosis, those people who were aware and had some knowledge of eye disease accessed eyecare services more frequently. Knowledge of common eye diseases is generally lacking. Age-related macular degeneration is the leading cause of blindness in Australia, yet only 20% of the present study population had heard of it. As there are often no early symptoms for glaucoma, community awareness of this disease and the need for screening of people at risk may allow timely diagnosis and more effective therapy before advanced visual field loss has occurred. An informed public is more likely to present earlier with visual symptoms before irreversible visual loss has occurred and is more likely to comply better with recommended therapy.