Quality of Life in People with Abdominal Aortic Aneurysms

腹主动脉瘤患者的生活质量

• 批准号: 8078138
• 负责人: Brian William Nolan
• 金额: $ 14.18万
• 依托单位: DARTMOUTH COLLEGE
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-01 至 2014-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8078138
• 关键词: Abdomen; Abdominal Aortic Aneurysm; Advisory Committees; Age; American; American College of Surgeons; Aneurysm; Anxiety; Behavior; Behavior Therapy; Blood Vessels; Caring; Cognitive; Databases; Development; Diagnosis; Education; Ensure; Feedback; Focus Groups; Gender; Goals; Guidelines; Hospitals; Image; Incidental Findings; Institution; Instruction; Intervention; Interview; Knowledge; Learning; Lebanon; Life; Longevity; Mails; Measures; Medical center; Monitor; Natural History; New England; New Hampshire; Operative Surgical Procedures; Patient Education; Patients; Pennsylvania; Perception; Persons; Preventive; Principal Investigator; Professional Organizations; Property; Provider; Psychometrics; Publishing; Quality of life; Questionnaires; Race; Records; Recruitment Activity; Registries; Reporting; Research; Review Literature; Risk; Rupture; Rural Population; SF-36; Sampling; Sampling Studies; Screening procedure; Services; Smoke; Structure; Surgeon; Surveys; Symptoms; Testing; United States; Universities; University Hospitals; Vent; Veterans; abstracting; base; design; experience; follow-up; improved; men; mortality; patient oriented; population based; repaired; suburb; tool; validation studies

DESCRIPTION (provided by applicant): Each year over 200,000 Americans are found to have an abdominal aortic aneurysm (AAA). Through a combination of factors, including increased screening, the number of diagnoses is likely to rise. The increasing diagnosis of AAA is a double-edged sword. Some patients will live longer: large population based studies have shown that screening selected patient groups reduces AAA- related mortality. But for some, the diagnosis may mean sacrificing quality of life. The reason - most AAA that are detected are small, below the size threshold for repair. Once diagnosed, these patients undergo surveillance, literally watching the aneurysm grow until surgery is recommended. In a study of over 126,000 U.S. veterans who undenwent screening, for every person diagnosed with AAA requiring repair, 16 were found to have a small AAA and unden/vent surveillance. The toll of surveillance on quality of life is not well understood, but may be substantial. Furthermore, there are currently no published guidelines for the 'treatment' or education of patients undergoing surveillance. The objective of this proposal is to develop and validate AAA specific quality of life and knowledge measures and describe quality of life and knowledge in patients undergoing surveillance. This tool will ultimately be used to design and measure interventions to improve the education and quality of life of these patients. The first aim of the project is to validate AAA specific quality of life and knowledge measures. Pilot measures will be refined through focus groups and cognitive interviews with AAA patients. Content validity and sensibility will be established through structured feedback sessions with vascular surgeons. Reliability, construct validity and discriminant validity will be established through a formal validation study. The second aim of the study is to assess AAA specific quality of life and knowledge in a broad spectrum of patients undergoing surveillance. Using the validated measures, a study of patients undergoing surveillance at three major U.S. medical centers will be conducted to describe AAA-specific quality of life and knowledge across race and gender. RELEVANCE (See instructions): Given the increasing diagnosis of AAA through screening and incidental findings, AAA surveillance will be a growing issue in the United States. Research on the impact of surveillance needs to be expanded to design and measure interventions to improve the education and quality of life of these patients. (End of Abstract)

描述（由申请人提供）：每年都有20万名美国人的腹部主动脉瘤（AAA）。通过多种因素的组合，包括增加筛查，诊断的数量可能会增加。 AAA诊断的增加是双刃剑。一些患者的寿命会更长：基于人群的大型研究表明，筛查选定的患者组降低了与AAA相关的死亡率。但是对于某些人来说，诊断可能意味着牺牲生活质量。原因 - 大多数检测到的AAA都小，低于修复大小的阈值。一旦诊断出，这些患者接受了监视，从字面上看动脉瘤就会生长，直到建议进行手术。在一项针对126,000多名美国退伍军人筛查的研究中，对于每个被诊断为AAA需要维修的人，发现16名AAA和Unden/vent监视。监视对生活质量的损失尚不清楚，但可能是很大的。此外，目前尚无关于接受监视的患者的“治疗”或教育的公开指南。该建议的目的是开发和验证AAA特定的生活质量和知识指标，并描述接受监视的患者的生活质量和知识。该工具最终将用于设计和测量干预措施，以改善这些患者的教育和生活质量。该项目的第一个目的是验证AAA特定的生活质量和知识指标。试点措施将通过焦点小组和与AAA患者的认知访谈进行完善。内容有效性和敏感性将通过与血管外科医生的结构化反馈课程确定。可靠性，结构有效性和判别有效性将通过正式验证研究确定。该研究的第二个目的是评估正在接受监视的广泛患者中的AAA特定生活质量和知识。使用经过验证的措施，将对在美国三个主要医疗中心进行监视的患者进行研究，以描述各种种族和性别的AAA特定的生活质量和知识。相关性（请参阅说明）：鉴于通过筛查和偶然发现对AAA的诊断越来越大，在美国，AAA监视将是一个日益严重的问题。需要扩大有关监视影响的研究，以设计和衡量干预措施，以改善这些患者的生活质量。 （抽象的结尾）