■地理萎缩(GA)影响患者和护理人员,然而,人们对他们各自的负担却知之甚少。MOSAIC研究旨在确定临床,情感,以及GA患者和护理人员的经济负担。
■共有来自美国(美国)的28名GA患者和17名护理人员,联合王国,和澳大利亚参加了个性化定性访谈,随后对美国102名患者和102名护理人员进行了横断面定量调查.对采访记录进行了分析,以开发概念模型,然后用于指导定量调查的设计。适当时在项目级别和分数级别描述数据(国家眼科研究所视觉功能问卷[NEIVFQ]-39和Zarit负担访谈[ZBI])。对于患者/护理人员二重样本,通过相关系数和散点图研究了NEIVFQ-39评分和ZBI评分之间的关联.
■GA对患者视力相关生活质量产生了重大影响,日常生活活动,和日常生活的工具性活动。患者和护理人员确定的观点和关键问题之间存在相当大的重叠。83%的护理人员报告说,由于患者活动受限,不得不开车送患者去预约。例如,41%的人报告说,他们成为照顾者后的就业状况发生了变化,其中50%的人由于照顾而无法工作。患者和护理人员的负担在NEIVFQ-39子量表与综合评分和ZBI评分之间具有-0.63至-0.21的相关性。
■这项研究证实了对GA患者和护理人员的支持不足。这两个群体都需要扩大金融渠道,社会,精神卫生资源。
这个总结是关于什么的?有地理萎缩的人,也叫GA,会失去视力,很难开车,阅读,和识别面孔。这会使他们的生活质量恶化。通常,有GA的人需要有人照顾他们。MOSAIC研究是为了找出GA如何影响健康,幸福,以及GA患者及其护理人员的财务状况。结果如何?采访了美国的一百零二名GA和102名护理人员。GA患者的平均年龄为68岁,护理人员的平均年龄为46岁。调查结果表明,大多数患有GA的人并不是因为视力不好而开车,而是依靠他们的照顾者开车去看医生和其他地方。由于视力恶化,他们也在家里读书和做事。有GA的人和护理人员都说他们感到压力很大。他们俩都担心花钱在需要使与GA生活更轻松的事情上。他们还对自己的财务状况感到压力,因为他们无法工作。患有GA的人最担心失去独立性,而护理人员则最担心GA所爱的人的未来。这项研究表明,GA对人们的健康和生活质量有严重影响,同时对他们的照顾者也有重大影响。
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
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.