QUALITY OF LIFE OF A PATIENT WITH GLAUCOMA

Abstract

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.

Full text

QUALITY OF LIFE OF A PATIENT 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
INTRODUCTION
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).
1
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.
METHODOLOGY
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
themes.
RESULTS AND DISCUSSION
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
(e mail:bssil@ou.ac.lk)
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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 et.al.(1997) 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 et.al.(1997), 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
activity.
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 et.al. 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 et.al. 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 et.al. 2010). Patients need considerable care and
attention and the support of others.
CONCLUSIONS/RECOMMENDATIONS
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.
REFERENCES
Abba, G. (2009). Prevalence of Glaucoma in Nigeria. The Internet Journal of Epidemiology. 9
(1).
Spratt, A., Aachal, K. and Ananth, V.(2008). Journal of current glaucoma practice. 2(1), 39-
45.
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
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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
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Quigley, H.A. & Broman A.T. (2006).The number of people with glaucoma worldwide in
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Skalicky, S., & Goldberg, I. (2013). Quality of Life in Glaucoma Patients.US Ophthalmic
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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
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ACKNOWLEDGMENTS
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
research
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