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Aspects of quality of life in the patient journey in glaucoma

Jones, Lee (2018). Aspects of quality of life in the patient journey in glaucoma. (Unpublished Doctoral thesis, City, University of London)

Abstract

Open angle glaucoma is a chronic disease of the optic nerve, where damage to the visual field can result in loss of vision. There is currently no cure for the disease. The four studies presented within this thesis aimed to explore aspects of the impact of glaucoma on patients’ everyday living and quality of life. The studies were designed to capture aspects of the ‘journey’ in glaucoma which may be particularly challenging for the patient; the initial stage, where quality of life may be reduced and the accompanying burden of ongoing disease monitoring; and the end stage, where significant loss of vision will likely cause visual disability and the daunting prospect of undergoing high-stakes ocular surgery. In the first study, the relationship between visual field loss (measured using mean deviation [MD]) and vison-related quality of life was assessed. Evidence indicated that glaucoma has a negative impact on vision-related quality of life, even in the earliest stage of the disease. However, the relationship is likely to be non-linear, as certain phases of the disease are more likely to have a greater impact than others. Specifically, each 1 decibel reduction in MD was associated with a decline of 2.3 (out of 100) units on a quality of life metric in the early stage of glaucoma (p<0.001), and 4.6 units in advanced disease (p=0.009). In the second study, vision-related quality of life was assessed amongst a cohort of newly-diagnosed glaucoma patients taking part in a randomised glaucoma therapy clinical trial. Responses on patient-reported outcome measures (PROMs) were assessed for group differences between treatment arms of the trial. In addition, group differences in quality of life between the stable patients and those with glaucomatous progression was compared. There were no statistically significant differences on PROMs between the two trial arms. Differences between stable and progressing glaucoma patients were observed only on PROMs specific to glaucoma (Glaucoma Quality of Life-15, p = 0.02; Glaucoma Activity Limitation-9, p = 0.02). In the third study, the equivalence of visual field measurement outcomes were assessed between patients attending standard glaucoma care services and those attending a novel glaucoma service, a virtual clinic. Average MD measurements for 250 patients in the virtual clinic were compared with a ‘big data’ repository of patients in the standard glaucoma service, which was used to calculate expected MD values. The speed of visual field progression between the two groups was also assessed. In the first analysis, 12 (4.8%; 95% confidence interval 2.5% to 8.2%) virtual clinic patients scored outside the 90% expected values based on the big data repository. In the second analysis, 1.9% (95% confidence interval 0.4% to 5.4%) virtual clinic patients had visual field changes outside of the expected 90% limits. In the fourth study, patient and surgeon experiences of advanced glaucoma surgery were assessed in a qualitative analysis. Interview transcripts underwent thematic analysis where, for the patients, key emerging themes included the emotional impact surgery, developing coping mechanisms, and how to improve the patient’s surgical journey. For the surgeons, themes included strategies for risk reduction, views on training, and the emotional impact of performing surgery on advanced glaucoma patients. To conclude, these studies highlight aspects of the patient journey in glaucoma where the disease may be most burdensome and troubling for the patient. Some practical changes, such as performing monitoring measurements in a virtual clinic, or augmented surgical care services for patients with advanced disease may help to ease the burden of glaucoma. In addition, the findings from these studies can help to improve understanding of the glaucoma journey and serve as an effective resource for learning, support, and professional development for patients, relatives, and carers, as well as professionals specialising in eye care.

Publication Type: Thesis (Doctoral)
Subjects: R Medicine > RE Ophthalmology
Departments: Doctoral Theses
Doctoral Theses > School of Health Sciences Doctoral Theses
School of Health Sciences > Optometry & Visual Science
Date Deposited: 04 Dec 2019 11:05
URI: https://openaccess.city.ac.uk/id/eprint/23307
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