Clinical Ophthalmology (Aug 2024)
The MOSAIC Study: A Mixed-Methods Study of the Clinical, Emotional, and Financial Burden of Geographic Atrophy Among Patients and Caregivers in the US
Abstract
Sophie J Bakri,1 Winfried MK Amoaku,2 Danielle Altman,3 Stéphane Quéré,4 Jaclyn Quilantan,5 Julia Carpenter-Conlin,5 Sujata P Sarda,5 Daniel L Jones,5 Jared S Nielsen6, † 1Department of Ophthalmology, Mayo Clinic, Rochester, MN, USA; 2Faculty of Medicine & Health Sciences, University of Nottingham, Queens Medical Centre, Nottingham, England, UK; 3Modus Outcomes, a THREAD Company, Cary, NC, USA; 4Modus Outcomes, a THREAD Company, Lyon, France; 5Apellis Pharmaceuticals, Inc, Waltham, MA, USA; 6Wolfe Eye Clinic PC, West Des Moines, IA, USA†Dr Jared S Nielsen passed away on June 14, 2024Correspondence: Sophie J Bakri, Department of Ophthalmology, Mayo Clinic, 200 First St. SW, Rochester, MN, 55905, USA, Tel +1 507-284-3614, Email [email protected]: 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.Plain Language Summary: What is this summary about?People with geographic atrophy, also called GA, can lose their eyesight and have a hard time driving, reading, and recognizing faces. This can worsen their quality of life. Often, people with GA need someone to care for them. The MOSAIC study was done to find out how GA affects health, happiness, and finances of people with GA and their caregivers.What were the results?One hundred and two people with GA and 102 caregivers in the United States were interviewed. The average age of people with GA was 68 years and of caregivers was 46 years. The findings showed that most people with GA did not drive because of their poor eyesight and instead counted on their caregivers to drive them to doctor appointments and other places. They also had a reading and doing things around their home because of their worsened eyesight.Both people with GA and caregivers said they felt stressed. They both worried about spending money on things they need to make living with GA easier. They also felt stressed about their finances because they could not work as much. People with GA worried most about losing their independence and caregivers worried most about the future of their loved one with GA.What do the results mean?This study showed that GA has a serious effect on people’s health and quality of life while also having a major impact on their caregivers.Keywords: age-related macular degeneration, functional vision, geographic atrophy, health-related quality of life, caregiver burden, disease burden
