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Leanne McDonald, Lydia Chang, Paula Turnbull, David Crabb; Taking the strain? Impact of glaucoma on patient’s informal caregivers. Invest. Ophthalmol. Vis. Sci. 2018;59(9):5183.
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An ‘informal caregiver’ (ICG) provides assistance for a person (typically a spouse/relative) with a chronic/disabling condition. ICGs save the UK an estimated £60bn per year in care costs. Little attention has been given to the experience of ICGs in eye disease, particularly those caring for patients with glaucoma and we aimed to investigate this.
Patients were recruited from one glaucoma clinic and sampled from two main groups. Early stage patients (EP) were people with Humphrey visual field (VF) mean deviation (MD) better than -6dB in both eyes who were on first line medical therapy (drops) only. Other patients were further stratified into moderate (MP) and advanced stage (AP) groups with the latter having MD worse than -12dB in both eyes. Patients were sent a questionnaire pack and 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. Research has indicated mean MCSI to be >10 in Multiple Sclerosis and Parkinson’s disease (Peters et al, 2013). All participants self-reported EuroQol-5 D (EQ5D) general health measure. Patients were not recruited if they had corrected binocular visual acuity (VA) worse than 0.3logMAR or other ocular disease. We report percentage of patients identifying an ICG, mean (standard deviation; SD) MCSI scores across groups and how these might vary due to other data (age, VF, EQ5D).
Our cross-sectional postal survey yielded responses from 107 patients (38% of those invited). Percentage of patients with an ICG varied by group with 26% (12/46), 36% (18/50) and 81% (9/11) for EP, MP and AP respectively (p=0.002). Mean (SD) best eye MD in those with and without an ICG was -7 (9) dB and -2 (4) dB respectively. Mean (SD) best eye MD was -0 (1) dB, -3 (3) dB and -21 (6) dB for EP, MP and AP’s. Mean (SD) MCSI varied by group with 0.3(0.7), 2.3(3.6) and 5.1(4.4) for EP, MP and AP respectively (p=0.002). Only 2 ICGs recorded a MCSI > 10. Patient EQ5D scores were associated with increased MCSI (p<0.001), but not age or number of co-morbidities.
ICG strain for patients with non-advanced glaucoma is negligible, certainly compared to other chronic disease. ICG strain increases moderately with worsening VF’s but in our sample this could be explained partly by worse general health. Glaucoma patient’s ICG’s might have other concerns not revealed by the MCSI: this is subject to further research.
This is an abstract that was submitted for the 2018 ARVO Annual Meeting, held in Honolulu, Hawaii, April 29 - May 3, 2018.
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