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. 2018 Nov 1;136(11):1217-1225.
doi: 10.1001/jamaophthalmol.2018.3456.

Evaluation of Clinical Questions and Patient-Important Outcomes Associated With the Treatment of Age-Related Macular Degeneration

Kristina B Lindsley  1   2 , Susan Hutfless  3 , Barbara S Hawkins  4 , Jill F Blim  5 , Dan Roberts  6 , Timothy W Olsen  7   8 , Flora Lum  9 , Kay Dickersin  1   10
Affiliations

Evaluation of Clinical Questions and Patient-Important Outcomes Associated With the Treatment of Age-Related Macular Degeneration

Kristina B Lindsley et al. JAMA Ophthalmol. .

Abstract

Importance: Identifying and prioritizing unanswered clinical questions may help to best allocate limited resources for research associated with the treatment of age-related macular degeneration (AMD).

Objective: To identify and prioritize clinical questions and outcomes for research associated with the treatment of AMD through engagement with professional and patient stakeholders.

Design, setting, and participants: Multiple cross-sectional survey questions were used in a modified Delphi process for panel members of US and international organizations, the American Academy of Ophthalmology (AAO) Retina/Vitreous Panel (n=7), health care professionals from the American Society of Retinal Specialists (ASRS) (n=90), Atlantic Coast Retina Conference (ACRC) and Macula 2017 meeting (n=34); and patients from MD (Macular Degeneration) Support (n=46). Data were collected from January 20, 2015, to January 9, 2017.

Main outcomes and measures: The prioritizing of clinical questions and patient-important outcomes for AMD.

Results: Seventy clinical questions were derived from the AAO Preferred Practice Patterns for AMD and suggestions by the AAO Retina/Vitreous Panel. The AAO Retina/Vitreous Panel assessed all 70 clinical questions and rated 17 of 70 questions (24%) as highly important. Health care professionals assessed the 17 highly important clinical questions and rated 12 of 17 questions (71%) as high priority for research to answer; 9 of 12 high-priority clinical questions were associated with aspects of anti-vascular endothelial growth factor agents. Patients assessed the 17 highly important clinical questions and rated all as high priority. Additionally, patients identified 6 of 33 outcomes (18%) as most important to them (choroidal neovascularization, development of advanced AMD, retinal hemorrhage, gain of vision, slowing vision loss, and serious ocular events).

Conclusions and relevance: Input from 4 stakeholder groups suggests good agreement on which 12 priority clinical questions can be used to underpin research related to the treatment of AMD. The 6 most important outcomes identified by patients were balanced between intended effects of AMD treatment (eg, slowing vision loss) and adverse events. Consideration of these patient-important outcomes may help to guide clinical care and future areas of research.

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Conflict of interest statement

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Ms Lindsley and Drs Hawkins and Dickersin are contributors to Cochrane and the Cochrane Eyes and Vision Group. Dr Olsen is the founder of iMacular Regeneration, LLC (nothing related to any subject discussed herein). No other disclosures were reported.

Figures

Figure.
Figure.. Flowchart for Identification and Prioritization of Clinical Questions
ACRC indicates Atlantic Coast Retina Conference; ASRS, American Society of Retinal Specialists; MD, macular degeneration; and PPP, preferred pratice pattern.
See this image and copyright information in PMC

Comment in

References

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