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Quality of life

The Eye-tem Bank Project: A system to measure vision-specific quality of life using item banking and computer adaptive testing system

In short: This project will develop technologically advanced tools to help researchers and clinicians better understand the impact of eye diseases and the effectiveness of new treatments.

The aim is to consequently improve the quality of life of patients. Loss of eyesight affects 500,000 Australians and costs the country nearly $10 billion a year in health and community support. But while eye disease is the focus of considerable clinical research, the overall impact of the disease and treatment on the patient's quality of life is often a matter of conjecture. It is important to understand and measure the impact of eye diseases on the patient’s quality of life and the effectiveness of new treatments particularly from their perspective. The major multi-centre Eye-tem Bank project is developing comprehensive quality of life measuring tools (survey questionnaires) in the form of item banks implemented via computer adaptive testing system (CAT) for all eye diseases across all population. An item bank (i.e. large collection of questions) administered via CAT system will provide a comprehensive, efficient, precise and adaptable measurement of ophthalmic quality of life as well as the benefits of treatments from patients’ perspectives.

 

A pair of glasses and beyond – impact of refractive error on people’s quality of life

In short: This project seeks to:

  • Identify quality of life issues in people with refractive error; and
  • Develop a technologically advanced patient-reported outcome to measure the quality of life in patients with refractive error.

Refractive errors are the optical defects of our visual systems which cause blurred vision. Refractive errors can easily be corrected by wearing glasses or contact lenses. Surgical corrections of refractive errors have gained recent widespread popularity. However, empirical evidences suggest that refractive errors are associated with huge social and economic consequences due to having to wear corrective lenses or undergo surgery. Meanwhile, uncorrected refractive error is the second leading cause of blindness after cataract. This suggests that refractive errors can have huge impact on people’s quality of life. Therefore, it is important to measure the effect of refractive errors and the benefit of different modes of corrections on quality of life from a patients’ perspectives. Therefore, the overarching aim of this study is to identify quality of life issues in people with refractive error and develop a technologically advanced patient-reported outcome measure in the form of item banking implemented via a computer adaptive testing system to enable comprehensive, efficient and precise measurement of Quality of life in patients with refractive error.

 

Identifying content for the refractive error-specific item bank to measure quality of life parameters

In short: This project measures the effect of refractive errors and the benefit of different modes of corrections on Quality of life from patients’ perspectives.

In the form of item banking implemented via a computer adaptive testing system to enable comprehensive, efficient and precise measurement of Quality of life in patients with refractive error. Therefore, the overarching aim of the study is to identify Quality of life issues in people with refractive error and develop a technologically advanced patient-reported outcome measure in the form of item banking implemented via a computer adaptive testing system to enable comprehensive, efficient and precise measurement of Quality of life in patients with refractive error. Refractive errors are the optical defects of our visual systems which cause blurred vision. Refractive errors can easily be corrected by wearing glasses or contact lenses. More recently, surgical corrections of refractive errors have gained widespread popularity. However, empirical evidences suggest that refractive errors are associated with huge social and economic consequences due to having to wear corrective lenses or undergo surgery. On the other hand, uncorrected refractive error is the second leading cause of blindness after cataract, accounting for 18% of total global blindness. This suggests that refractive errors can have huge impact on people’s quality of life.

 

Development of a novel testing system to measure the impact of age-related macular degeneration on quality of life

In short: Development of an innovative and technologically advanced approach to measure the quality of life in macular degeneration patients.

Age-related macular degeneration (AMD) is the most common cause of irreversible vision loss and blindness in the western world including in Australia. AMD can severely compromise an individual’s ability to perform day-to-day tasks needing fine vision (e.g. reading, writing, watching TV, driving, household chores etc.) due to resulting visual impairment. The holistic impact of AMD on the person has not been well studied, but evidence strongly suggests that AMD leads to poor quality of life. Recent advances in medical research have improved the treatment options and prognosis for people with AMD and further new therapies are being developed. It is important to measure the benefits of these treatments in terms of their impacts on patients’ Quality of life from their perspectives. This study aims to develop an innovative and technologically advanced approach called item banking implemented via a computer adaptive testing system offers a scientifically improved approach to measuring the patient’s point of view in people with AMD.

 

Seeing through the eyes of people with other vitreo-retinal diseases

In short: Understanding how the quality of life is affected in patients who are living with eye diseases.

Quality of life is severely compromised in people with major blinding retinal conditions such as age related macular degeneration (AMD) and diabetic retinopathy (DR). However, very little is known about the quality of life impact in less common but potentially blinding other vitreo-retinal diseases such as hereditary retinal diseases (retinitis pigmentosa, cone dystrophy) or acquired retinal diseases (macular hole, vascular occlusion). The primary aim of this study is to understand how the quality of life is affected in patients who are living with diseases. The information about quality of life impacts will ultimately be used to develop survey questionnaires that will enable us to quantify quality of life impacts in these diseases. Such survey questionnaires will be used to assess effectiveness of new treatments/interventions in terms of quality of life gain in research and clinical practice.