title: Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration.
abstract: To define a minimum set of outcome measures for tracking, comparing, and improving macular degeneration care.
  
  
  
  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).
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: International Consortium for Health Outcomes Measurement, Boston, Massachusetts; Department of Ophthalmology, St Thomas' Hospital, London, United Kingdom.
authors.forename: Ian A
authors.initials: IA
authors.lastname: Rodrigues
authors.affiliation: International Consortium for Health Outcomes Measurement, Boston, Massachusetts.
authors.forename: Sara M
authors.initials: SM
authors.lastname: Sprinkhuizen
authors.affiliation: Department of Ophthalmology, University Hospital Zurich, and the University of Zurich, Zurich, Switzerland; The Save Sight Institute, The University of Sydney, Sydney, Australia.
authors.forename: Daniel
authors.initials: D
authors.lastname: Barthelmes
authors.affiliation: Byers Eye Institute, Stanford University, Palo Alto, California.
authors.forename: Mark
authors.initials: M
authors.lastname: Blumenkranz
authors.affiliation: Singapore National Eye Center, Singapore.
authors.forename: Gemmy
authors.initials: G
authors.lastname: Cheung
authors.affiliation: Wills Eye Hospital, Thomas Jefferson University, Philadelphia, Pennsylvania.
authors.forename: Julia
authors.initials: J
authors.lastname: Haller
authors.affiliation: Gloucestershire Hospitals NHS Foundation Trust, Gloucester, United Kingdom.
authors.forename: Robert
authors.initials: R
authors.lastname: Johnston
authors.affiliation: Aravind Eye Hospital, Madurai, India.
authors.forename: Ramasamy
authors.initials: R
authors.lastname: Kim
authors.affiliation: Erasmus Medical Center, Rotterdam, Netherlands.
authors.forename: Caroline
authors.initials: C
authors.lastname: Klaver
authors.affiliation: Royal College of Ophthalmologists, London, United Kingdom.
authors.forename: Martin
authors.initials: M
authors.lastname: McKibbin
authors.affiliation: Hospital Selayang, Selangor, Malaysia.
authors.forename: Nor Fariza
authors.initials: NF
authors.lastname: Ngah
authors.affiliation: Byers Eye Institute, Stanford University, Palo Alto, California; Veterans Affairs Palo Alto Health Care System, Livermore, California.
authors.forename: Suzann
authors.initials: S
authors.lastname: Pershing
authors.affiliation: International Consortium for Health Outcomes Measurement, Boston, Massachusetts.
authors.forename: Dato
authors.initials: D
authors.lastname: Shankar
authors.affiliation: Department of Ophthalmology & Visual Sciences, Kyoto University Graduate School of Medicine, Kyoto, Japan; Division of Medical Information Technology & Administration Planning, Kyoto University Hospital, Kyoto, Japan.
authors.forename: Hiroshi
authors.initials: H
authors.lastname: Tamura
authors.affiliation: Moorfields Eye Hospital, London, United Kingdom.
authors.forename: Adnan
authors.initials: A
authors.lastname: Tufail
authors.affiliation: Baylor College of Medicine, Houston, Texas.
authors.forename: Christina Y
authors.initials: CY
authors.lastname: Weng
authors.affiliation: Umeå University, Registercenter Syd/EyeNet Sweden, Karlskrona, Sweden.
authors.forename: Inger
authors.initials: I
authors.lastname: Westborg
authors.affiliation: Macular Society, Andover, United Kingdom.
authors.forename: Catherine
authors.initials: C
authors.lastname: Yelf
authors.affiliation: Department of Ophthalmology & Visual Sciences, Kyoto University Graduate School of Medicine, Kyoto, Japan.
authors.forename: Nagahisa
authors.initials: N
authors.lastname: Yoshimura
authors.affiliation: The Save Sight Institute, The University of Sydney, Sydney, Australia. Electronic address: mark.gillies@sydney.edu.au.
authors.forename: Mark C
authors.initials: MC
authors.lastname: Gillies
mesh_terms: D003697:Delphi Technique; D006801:Humans; D008268:Macular Degeneration / Q000628:therapy*; D017063:Outcome Assessment, Health Care / Q000379:methods / Q000592:standards*; D018802:Patient-Centered Care / Q000592:standards*; D011785:Quality Assurance, Health Care; D019984:Quality Indicators, Health Care; D011788:Quality of Life; D014792:Visual Acuity