Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration

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• 作者：Ian A. Rodrigues<sup>asup><sup> ; sup><sup>bsup> ; Sara M. Sprinkhuizen<sup>asup> ; Daniel Barthelmes<sup>csup><sup> ; sup><sup>dsup> ; Mark Blumenkranz<sup>esup> ; Gemmy Cheung<sup>fsup> ; Julia Haller<sup>gsup> ; Robert Johnston<sup>hsup> ; Ramasamy Kim<sup>isup> ; Caroline Klaver<sup>jsup> ; Martin McKibbin<sup>ksup> ; Nor Fariza Ngah<sup>lsup> ; Suzann Pershing<sup>esup><sup> ; sup><sup>msup> ; Dato Shankar<sup>asup> ; Hiroshi Tamura<sup>nsup><sup> ; sup><sup>osup> ; Adnan Tufail<sup>psup> ; Christina Y. Weng<sup>qsup> ; Inger Westborg<sup>rsup> ; Catherine Yelf<sup>ssup> ; Nagahisa Yoshimura<sup>nsup> ; Mark C. Gillies<sup>dsup><sup> ; sup><sup>mark.gillies@sydney.edu.au" class="auth_mail" title="E-mail the corresponding authorsup>
• 刊名：American Journal of Ophthalmology
• 出版年：2016
• 出版时间：August 2016
• 年：2016
• 卷：168
• 期：Complete
• 页码：1-12
• 全文大小：1016 K

文摘

To define a minimum set of outcome measures for tracking, comparing, and improving macular degeneration care.

sSec_2">Design

spara0015">Recommendations from a working group of international experts in macular degeneration outcomes registry development and patient advocates, facilitated by the International Consortium for Health Outcomes Measurement (ICHOM).

sSec_3">Methods

spara0020">Modified Delphi technique, supported by structured teleconferences, followed by online surveys to drive consensus decisions. Potential outcomes were identified through literature review of outcomes collected in existing registries and reported in major clinical trials. Outcomes were refined by the working group and selected based on impact on patients, relationship to good clinical care, and feasibility of measurement in routine clinical practice.

sSec_4">Results

spara0025">Standardized measurement of the following outcomes is recommended: visual functioning and quality of life (distance visual acuity, mobility and independence, emotional well-being, reading and accessing information); number of treatments; complications of treatment; and disease control. Proposed data collection sources include administrative data, clinical data during routine clinical visits, and patient-reported sources annually. Recording the following clinical characteristics is recommended to enable risk adjustment: age; sex; ethnicity; smoking status; baseline visual acuity in both eyes; type of macular degeneration; presence of geographic atrophy, subretinal fibrosis, or pigment epithelial detachment; previous macular degeneration treatment; ocular comorbidities.

sSec_5">Conclusions

spara0030">The recommended minimum outcomes and pragmatic reporting standards should enable standardized, meaningful assessments and comparisons of macular degeneration treatment outcomes. Adoption could accelerate global improvements in standardized data gathering and reporting of patient-centered outcomes. This can facilitate informed decisions by patients and health care providers, plus allow long-term monitoring of aggregate data, ultimately improving understanding of disease progression and treatment responses.