Optometry and Visual Science, City, University of London, London, UK.
Psychology, School of Human and Social Sciences, University of West London, London, UK.
Eye (Lond). 2020 Jan;34(1):197-204. doi: 10.1038/s41433-019-0688-4. Epub 2019 Nov 25.
To estimate informal caregiver (ICG) strain in people from a glaucoma clinic.
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).
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.
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.
评估青光眼诊所患者的非正式照护者（ICG）负担。
从英国的一家单一诊所连续确定青光眼患者，以进行横断面邮寄调查。该样本通过一些被指定为患有晚期青光眼的患者进行了有意丰富（双眼视野平均偏差[VF]均差低于-12dB）。患者被要求识别一位记录经改良的照护者负担指数（MCSI）的 ICG，这是一种经过验证的 13 项工具，评分范围为 0-26。先前的研究表明，在多发性硬化症和帕金森病中，平均 MCSI 大于 10。所有参与者都提供了自我报告的一般健康状况（EQ5D）。
对 105 名患者（邀请人数的 43%）的回应进行了分析；在 105 名患者中仅有 38 名患者命名了一位 ICG。MCSI 的平均值（95%置信区间[CI]）为 2.4（1.3，3.6），只有三位 ICG 的 MCSI 记录大于 7。与非晚期 VF 损失的患者（31%，94 例中的 29 例；p=0.001）相比，晚期 VF 损失患者的 ICG 比例高得多（82%，11 例中的 9 例）。晚期患者的 MCSI 平均值（标准差）明显升高（5.6[4.9]比非晚期患者的 1.5[2.2]；p=0.040）。VF 的恶化和患者自我报告的一般健康状况（EQ5D）恶化与 MCSI 的恶化相关。
与其他慢性疾病相比，非晚期青光眼患者的 MCSI 测量的 ICG 负担可以忽略不计。随着 VF 的恶化，ICG 负担会适度增加，但这在我们的患者样本中可能部分是由于一般健康状况较差所致。
