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Beyond intraocular pressure: Optimizing patient-reported outcomes in glaucoma.
Progress in Retinal and Eye Research ( IF 18.6 ) Pub Date : 2019-10-31 , DOI: 10.1016/j.preteyeres.2019.100801
Eva K Fenwick 1 , Ryan Ek Man 1 , Tin Aung 2 , Pradeep Ramulu 3 , Ecosse L Lamoureux 1
Affiliation  

Glaucoma, an irreversible blinding condition affecting 3–4% adults aged above 40 years worldwide, is set to increase with a rapidly aging global population. Raised intraocular pressure (IOP) is a major risk factor for glaucoma where the treatment paradigm is focused on managing IOP using medications, laser, or surgery regimens. However, notwithstanding IOP and other clinical parameters, patient-reported outcomes, including daily functioning, emotional well-being, symptoms, mobility, and social life, remain the foremost concerns for people being treated for glaucoma. These outcomes are measured using objective patient-centered outcome measures (PCOMs) and subjective patient-reported outcome measures (PROMs). Studies using PCOMs have shown that people with glaucoma have several mobility, navigational and coordination challenges; reading and face recognition deficits; and are slower in adapting to multiple real-world situations when compared to healthy controls. Similarly, studies have consistently demonstrated, using PROMs, that glaucoma substantially and negatively impacts on peoples’ self-reported visual functioning, mobility, independence, emotional well-being, self-image, and confidence in healthcare, compared to healthy individuals, particularly in those with late-stage disease undergoing a heavy treatment regimen. The patient-centred effectiveness of current glaucoma treatment paradigms is equivocal due to a lack of well-designed randomized controlled trials; short post-treatment follow-up periods; an inappropriate selection or availability of PROMs; and/or an insensitivity of currently available PROMs to monitor changes especially in patients with newly diagnosed early-stage glaucoma. We provide a comprehensive, albeit non-systematic, critique of the psychometric properties, limitations, and recent advances of currently available glaucoma-specific PCOMs and PROMs. Finally, we propose that item banking and computerized adaptive testing methods can address the multiple limitations of paper-pencil PROMs; customize their administration; and have the potential to improve healthcare outcomes for people with glaucoma.



中文翻译:

眼压之外:优化患者报告的青光眼结局。

青光眼是一种不可逆转的致盲疾病,在全球40岁以上的成年人中有3-4%的成年人受到影响,而随着全球人口的快速老龄化,青光眼将会增加。眼内压升高(IOP)是青光眼的主要危险因素,其治疗范例主要是使用药物,激光或手术方案来管理IOP。然而,尽管有眼压和其他临床参数,患者报告的结局,包括日常功能,情绪健康,症状,活动能力和社交生活,仍然是接受青光眼治疗的人们最关注的问题。这些结果使用客观的以患者为中心的结果测量(PCOM)和主观的患者报告的结果测量(PROM)进行测量。使用PCOM进行的研究表明,青光眼患者在行动,导航和协调方面面临诸多挑战。阅读和面部识别缺陷;与健康对照相比,适应多种现实情况的速度较慢。类似地,研究一直使用PROM证明,与健康个体相比,青光眼对人们自我报告的视觉功能,活动能力,独立性,情感幸福感,自我形象以及对医疗保健的信心产生重大负面影响。患有晚期疾病的患者需接受大量治疗。由于缺乏精心设计的随机对照试验,目前以青光眼为治疗模式的以患者为中心的效果是模棱两可的。治疗后的随访时间短;PROM的选择或可用性不当;和/或当前可用的PROM对监测变化不敏感,尤其是在新诊断的早期青光眼患者中。我们提供了对心理测量特性,局限性以及当前可用的特定于青光眼的PCOM和PROM的最新进展的全面(尽管不是系统的)批评。最后,我们提出项目库和计算机化的自适应测试方法可以解决纸笔PROM的多种局限性。定制他们的管理;并有可能改善青光眼患者的医疗效果。我们建议项目银行和计算机化的自适应测试方法可以解决纸笔PROM的多个限制;定制他们的管理;并有可能改善青光眼患者的医疗效果。我们建议项目银行和计算机化的自适应测试方法可以解决纸笔PROM的多个限制;定制他们的管理;并有可能改善青光眼患者的医疗效果。

更新日期:2019-10-31
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