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

Kristina B. Lindsley, Susan Hutfless, Barbara S. Hawkins, Jill F. Blim, Dan Roberts, Timothy Olsen, Flora Lum, Kay Dickersin

Research output: Contribution to journalArticle

1 Citation (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1217-1225
Number of pages9
JournalJAMA Ophthalmology
Volume136
Issue number11
DOIs
StatePublished - Nov 1 2018

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Macular Degeneration
Retina
Ophthalmology
Therapeutics
Research
Outcome Assessment (Health Care)
Retinal Hemorrhage
Delivery of Health Care
Choroidal Neovascularization
Vascular Endothelial Growth Factor A
Cross-Sectional Studies
Organizations

ASJC Scopus subject areas

  • Ophthalmology

Cite this

Evaluation of Clinical Questions and Patient-Important Outcomes Associated with the Treatment of Age-Related Macular Degeneration. / Lindsley, Kristina B.; Hutfless, Susan; Hawkins, Barbara S.; Blim, Jill F.; Roberts, Dan; Olsen, Timothy; Lum, Flora; Dickersin, Kay.

In: JAMA Ophthalmology, Vol. 136, No. 11, 01.11.2018, p. 1217-1225.

Research output: Contribution to journalArticle

Lindsley, Kristina B. ; Hutfless, Susan ; Hawkins, Barbara S. ; Blim, Jill F. ; Roberts, Dan ; Olsen, Timothy ; Lum, Flora ; Dickersin, Kay. / Evaluation of Clinical Questions and Patient-Important Outcomes Associated with the Treatment of Age-Related Macular Degeneration. In: JAMA Ophthalmology. 2018 ; Vol. 136, No. 11. pp. 1217-1225.
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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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