Taking the strain? Impact of glaucoma on patients' informal caregivers.

PURPOSE: To estimate informal caregiver (ICG) strain in people from a glaucoma clinic. METHODS: Patients with glaucoma were consecutively identified from a single clinic in England for a cross-sectional postal survey. The sample was deliberately enriched with a number of patients designated as having advanced glaucoma (visual field [VF] mean deviation worse than -12 dB in both eyes). Patients were asked to identify an ICG who recorded a Modified Caregiver Strain Index (MCSI), a validated 13 item instrument scored on a scale of 0-26. Previous research has indicated mean MCSI to be >10 in multiple sclerosis and Parkinson's disease. All participants gave a self-reported measure of general health (EQ5D). RESULTS: Responses from 105 patients (43% of those invited) were analysed; only 38 of the 105 named an ICG. Mean (95% confidence interval [CI]) MCSI was 2.4 (1.3, 3.6) and only three ICGs recorded a MCSI > 7. The percentage of patients with an ICG was much higher in patients with advanced VF loss (82%; 9/11) when compared with 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 general health (EQ5D) of the patient were associated with worsening MCSI. CONCLUSION: ICG strain, as measured by MCSI, for patients with non-advanced glaucoma is negligible, compared with other chronic disease. ICG strain increases moderately with worsening VFs but this could be partly explained by worse general health in our sample of patients.

Illness perceptions in people newly diagnosed with glaucoma and ocular hypertension.

BACKGROUND/AIMS: To 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. METHODS: A 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). RESULTS: Average 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). CONCLUSIONS: Some 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.