The MOSAIC Study: A Mixed-Methods Study of the Clinical, Emotional, and Financial Burden of Geographic Atrophy Among Patients and Caregivers in the US.

Autor: Bakri SJ; Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA., Amoaku WMK; Faculty of Medicine & Health Sciences, University of Nottingham, Queens Medical Centre, Nottingham, England, UK., Altman D; Modus Outcomes, a THREAD Company, Cary, NC, USA., Quéré S; Modus Outcomes, a THREAD Company, Lyon, France., Quilantan J; Apellis Pharmaceuticals, Inc, Waltham, MA, USA., Carpenter-Conlin J; Apellis Pharmaceuticals, Inc, Waltham, MA, USA., Sarda SP; Apellis Pharmaceuticals, Inc, Waltham, MA, USA., Jones DL; Apellis Pharmaceuticals, Inc, Waltham, MA, USA., Nielsen JS; Wolfe Eye Clinic PC, West Des Moines, IA, USA.
Jazyk: angličtina
Zdroj: Clinical ophthalmology (Auckland, N.Z.) [Clin Ophthalmol] 2024 Aug 23; Vol. 18, pp. 2357-2368. Date of Electronic Publication: 2024 Aug 23 (Print Publication: 2024).
DOI: 10.2147/OPTH.S455984
Abstrakt: Purpose: Geographic atrophy (GA) impacts both patients and caregivers, yet little is understood about their respective burdens. The MOSAIC study aimed to identify the clinical, emotional, and financial burden among patients with GA and caregivers.
Methods: A total of 28 patients with GA and 17 caregivers from the United States (US), the United Kingdom, and Australia participated in individualized qualitative interviews followed by a cross-sectional quantitative survey of 102 patients and 102 caregivers in the US. Interview transcripts were analyzed to develop conceptual models, which were then used to guide the design of quantitative surveys. Data were described at the item level and score level when appropriate (National Eye Institute Visual Function Questionnaire [NEI VFQ]-39 and Zarit Burden Interview [ZBI]). For the patient/caregiver dyad sample, the association between the NEI VFQ-39 scores and ZBI score was explored through correlation coefficients and scatterplots.
Results: GA had a substantial impact on patients' vision-related quality of life, activities of daily living, and instrumental activities of daily living. There was considerable overlap between perspectives and key concerns identified by patients and caregivers. Eighty-three percent of caregivers reported having to drive patients to appointments due to limited patient mobility, for example, and 41% reported a change in their employment status after becoming a caregiver, with 50% of them unable to work due to caregiving. The burden of patients and caregivers had a correlation ranging from -0.63 to -0.21 between NEI VFQ-39 subscale and composite scores and ZBI score.
Conclusion: This study confirms the paucity of support for both patients with GA and caregivers. Both groups require expanded access to financial, social, and mental health resources.
Competing Interests: Sophie J. Bakri reports consulting fees from AbbVie, Adverum, Amgen, Annexon, Apellis, Aviceda, Cholgene, Eyepoint, iLumen, Iveric Bio, Genentech, Kala, Neurotech, Novartis, Pixium, Ocular Therapeutix, Outlook Therapeutics, Regeneron, Rejuvitas, Regenxbio, Roche, VoxelCloud, and Zeiss; and stock or options in Revana. Winfried M. K. Amoaku reports grants from Bayer and Boehringer Ingelheim; consulting fees from AbbVie, Alimera, Allergan, Apellis, Novartis, and Roche; speaking fees from AbbVie, Novartis, and Roche; serving on an advisory board for Bioeq; and being an unpaid board member for the Convention for Biomedical Research, Ghana. Danielle Altman was an employee of Modus Outcomes at the time of the study. Stéphane Quéré is an employee of Modus Outcomes, which was contracted by Apellis Pharmaceuticals on this study. Jaclyn Quilantan and Sujata P. Sarda are employees of Apellis Pharmaceuticals. Julia Carpenter-Conlin was an employee of Apellis Pharmaceuticals at the time of the study. Daniel L. Jones is an employee of Apellis Pharmaceuticals and has equity interest in the company. Jared S. Nielsen (deceased) reported consulting fees from Astellas, Apellis, Gyroscope, Genentech Roche, Regeneron, Iveric Bio, Novartis, and Kodiak Scientific; and served on advisory boards for Genentech, Iveric Bio, and Regeneron. He also participated in clinical trials for Gemini Therapeutics, Clearside, Regeneron, Ocular Therapeutics, Regenxbio, Bayer, and Novo Nordisk. The authors report no other conflicts of interest in this work.
(© 2024 Bakri et al.)
Databáze: MEDLINE
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