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

Rodrigues IA 1 , Sprinkhuizen SM 2 , Barthelmes D 3 , Blumenkranz M 4 , Cheung G 5 , Haller J 6 Show all authors , Johnston R 7 , Kim R 8 , Klaver C 9 , McKibbin M 10 , Ngah NF 11 , Pershing S 12 , Shankar D 2 , Tamura H 13 , Tufail A 14 , Weng CY 15 , Westborg I 16 , Yelf C 17 , Yoshimura N 18 , Gillies MC 19

Affiliations 

  • 1 International Consortium for Health Outcomes Measurement, Boston, Massachusetts; Department of Ophthalmology, St Thomas' Hospital, London, United Kingdom
  • 2 International Consortium for Health Outcomes Measurement, Boston, Massachusetts
  • 3 Department of Ophthalmology, University Hospital Zurich, and the University of Zurich, Zurich, Switzerland; The Save Sight Institute, The University of Sydney, Sydney, Australia
  • 4 Byers Eye Institute, Stanford University, Palo Alto, California
  • 5 Singapore National Eye Center, Singapore
  • 6 Wills Eye Hospital, Thomas Jefferson University, Philadelphia, Pennsylvania
  • 7 Gloucestershire Hospitals NHS Foundation Trust, Gloucester, United Kingdom
  • 8 Aravind Eye Hospital, Madurai, India
  • 9 Erasmus Medical Center, Rotterdam, Netherlands
  • 10 Royal College of Ophthalmologists, London, United Kingdom
  • 11 Hospital Selayang, Selangor, Malaysia
  • 12 Byers Eye Institute, Stanford University, Palo Alto, California; Veterans Affairs Palo Alto Health Care System, Livermore, California
  • 13 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
  • 14 Moorfields Eye Hospital, London, United Kingdom
  • 15 Baylor College of Medicine, Houston, Texas
  • 16 Umeå University, Registercenter Syd/EyeNet Sweden, Karlskrona, Sweden
  • 17 Macular Society, Andover, United Kingdom
  • 18 Department of Ophthalmology & Visual Sciences, Kyoto University Graduate School of Medicine, Kyoto, Japan
  • 19 The Save Sight Institute, The University of Sydney, Sydney, Australia. Electronic address: mark.gillies@sydney.edu.au
Am J Ophthalmol, 2016 08;168:1-12.
PMID: 27131774 DOI: 10.1016/j.ajo.2016.04.012

Abstract

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

DESIGN: 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).

METHODS: 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.

RESULTS: 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.

CONCLUSIONS: 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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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