Background/aimsTo determine whether self-reported illness perceptions in newly diagnosed patients with primary open-angle glaucoma (POAG) and ocular hypertension (OHT) are more negative compared with peers who have lived with their diagnosis for more than 2 years.MethodsA cross-sectional study of 58 newly diagnosed patients with POAG and OHT recruited at their first clinic visit. Electronic patient records were used to identify similar patients (n=58, related by age and severity of visual field loss) who had their diagnosis for >2 years. All participants completed the Brief Illness Perception Questionnaire (BIPQ), EQ5D general health measure and Type D Personality Scale (DS14).ResultsAverage BIPQ scores were similar for people newly diagnosed with POAG and POAG diagnosed >2 years and were no different to newly diagnosed OHT and OHT diagnosed >2 years POAG (p=0.46). An analysis correcting for personality type (DS14) and general health (EQ5D) indicated newly diagnosed patients with POAG to have marginally better illness perceptions 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 POAG with a diagnosis >2 years understood better their condition to be long-term (p<0.01).ConclusionsSome illness perceptions differed between newly diagnosed people and patients living with their diagnosis for >2 years. Illness perception for people with manifest glaucoma and at risk of glaucoma (OHT) were similar; the latter might benefit from an intervention at diagnosis that highlights the better prognosis for OHT compared with POAG.

What was known before  Chronic open angle glaucoma (COAG) can cause difficulties with activities of daily living such as driving and mobility.  Other chronic eye diseases, for example, age related macular degeneration lead to an increase in reliance on family support networks; this is termed informal caregiving. What this study adds  The first to estimate caregiver strain in a sample of COAG caregivers using a validated instrument.  Informal caregiver strain is negligible in most patients consecutively sampled from a glaucoma clinic in England.  ICG strain becomes inflated in patients with advanced visual field (VF) loss in COAG.  ICG strain increases moderately with worsening VF's but in our sample some of this could be explained by worse general health.