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Expert patient programme for recently diagnosed patients with chronic open angle glaucoma (COAG)

Amro, Raed (2013). Expert patient programme for recently diagnosed patients with chronic open angle glaucoma (COAG). (Unpublished Doctoral thesis, City University London)


Chronic Open Angle Glaucoma (COAG) refers to a chronic progressive condition that is characterised by damage to the optic nerve, resulting in peripheral visual loss that can progress to involve the fovea and central vision; subsequently causing blindness. COAG is reported to have a poor level of adherence to treatment due to its asymptomatic nature. In this study, a Glaucoma Expert Patient Programme (GEPP) demonstrated new ways of improving patients' experience and adherence to COAG treatment. The research has employed an Information-Motivation-8ehavioural Skills Model to understand the association between knowledge, motivation and behavioural skills in an attempt to improve adherence amongst recently diagnosed patients. Patient participation was at the heart of every component of the study.

In this research, four Expert Patients were trained and supported to deliver an educational programme (termed the GEPP) to 25 recently diagnosed patients with COAG (Intervention Group) and then a comparison was made to 25 participants (Control Group) that were also recently diagnosed with COAG but did not receive the educational programme. Three pre and post educational programme validated questionnaires were used to measure patients' knowledge, satisfaction and adherence at baseline and then discern changes at 1 month and 6 months follow up to the GEPP intervention. Staff (N = 10), Expert Patient (N = 4), Intervention Group (N=10) and Control Group (N=10) semi-structured interviews were also conducted to obtain deeper insight into their experiences of engaging in the programme. Data analysis indicated IMPROVING AWARENESS was the main theme that emerged supported by three subthemes: knowledge, satisfaction and adherence. This research has taken the Patient-Patient relationship to a higher level. It is viewed that the Expert Patients' experience is crucial and valuable to improving the experience, knowledge and adherence of newly diagnosed patients with COAG.

The GEPP delineated in this study provided insight regarding individuals' life experiences of living with and managing chronic complex glaucoma. Implications for practice relate to the development of tailored educational programmes. This research contributed new knowledge to improving the adherence practices of glaucoma patients. It also demonstrated the value of Expert Patients' experience and their contribution to assisting newly diagnosed patients in self-managing their COAG.

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