City Research Online

Abstract

Chronic Open-angle Glaucoma (COAG) is a disease affecting the optic nerve, which can cause slow and irreversible sight loss. Once diagnosed, COAG requires lifelong monitoring in a hospital setting. The four studies presented within this thesis aimed to explore the experience of living with COAG through investigating some of the cognitive and emotional processes of patients and their informal caregivers (ICG). In the first study (cross-sectional) illness representations in 58 newly diagnosed patients with COAG were similar to 58 peers who had been diagnosed for > 2 years. The main outcome was the Brief Illness Perception Questionnaire (BIPQ). Analysis correcting for personality type (DS14) and general health (EQ-5D) indicated newly diagnosed patients to have marginally better illness representations on individual BIPQ items quantifying impact on life in general, experience of symptoms and ‘understanding’ of their condition (all p<0.01). In contrast, patients with COAG with a diagnosis >2 years understood better their condition to be long-term (p<0.01). The second study (longitudinal feasibility) tested the hypothesis that patients could self-monitor their COAG using a web-based diary tool. Ten volunteers were prompted to monitor symptoms every three days and complete a diary about their vision during daily life using a web-based diary tool over an 8-week period. Completion rate to items was excellent (96%). Themes from a qualitative synthesis of the diary entries related to behavioural aspects of glaucoma. Patients reported a variety of important life changes due to their COAG, such as increased frustration and cessation of activities as well the importance of social support and clinician trust as protective factors for their wellbeing. The third study (cross-sectional) investigated the factors which may lead to an increased reliance on ICG. A modified version of the Caregiver Strain Index (MCSI) was used to investigate ICG strain. In the patients with an ICG, 87% (33/38) self-reported they were married or in a committed relationship as opposed to being single, divorced, widowed or separated; 60% (40/67) in the patients who did not have an ICG (p=0.004). Percentage of patients with an ICG was also much higher in patients with advanced VF loss (82%; 9/11) when compared to those with non-advanced VF loss (31%; 29/94; p=0.001). Mean (standard deviation) MCSI was considerably inflated in the advanced patients (5.6 [4.9] vs 1.5 [2.2] for non-advanced; p=0.040). Worsening VF and poorer self-reported EQ-5D were associated with worsening MCSI. The final study (focus groups) used interpretative phenomenological analysis (IPA) to investigate experiences of ICG. Experiences of patients with ICG and patients without ICG were compared. Participants without an ICG feared a loss of independence more than those with an ICG. Those with an ICG stressed the importance of their ICG being involved in communicating with care teams and administering medications. ICGs felt a sense of obligation toward the patient, but this was not generally associated with negative emotions. To conclude, these studies demonstrate new knowledge on the complexities of the cognitive and emotional processes involved in living with COAG, including the importance of both the patient and their support network in forming and maintaining positive attitudes toward health and illness. Results from this thesis may inform a more integrated approach to COAG clinical practice, encompassing both the patient and their ICG.

Publication Type:	Thesis (Doctoral)
Subjects:	R Medicine > RE Ophthalmology
Departments:	School of Health & Psychological Sciences > Optometry & Visual Sciences

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