Health Literacy-Sensitive Decision Aid about Transplantation for COPD Patients

慢性阻塞性肺病患者移植的健康素养敏感决策辅助

• 批准号: 8629336
• 负责人: Cynthia Jane Gries
• 金额: $ 22.91万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-01-01 至 2015-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8629336
• 关键词: Affect; Breathing; Bronchodilator Agents; Cause of Death; Cessation of life; Chronic Obstructive Airway Disease; Complex; Conflict (Psychology); Data; Decision Aid; Decision Making; Dependence; Development; Diffuse; Disease; Ensure; Family Caregiver; Feasibility Studies; Future; Goals; Health Status; Impairment; Individual; Infection; Informed Consent; Intervention; Interview; Kidney Failure; Knowledge; Life; Longevity; Lung; Lung Transplantation; Maps; Measures; Medical; Methods; Nature; Online Systems; Operative Surgical Procedures; Organ Transplantation; Oxygen; Patients; Persons; Play; Population; Procedures; Process; Public Health; Quality of life; Randomized Controlled Trials; Recurrence; Relative (related person); Renal carcinoma; Reporting; Role; Science; Scientist; Self Efficacy; Solid; Steroids; Structure; Surveys; Technology; Testing; Therapeutic; Transplant Recipients; Transplantation; Tweens; Ventilator; arm; cohort; computer human interaction; cost; expectation; health literacy; improved; innovation; iterative design; knowledge of results; preference; prototype; public health relevance; risk perception; usability; user centered design

ABSTRACT COPD affects more than 5 percent of the population and is the third most common cause of death in the United States.1 Unfortunately, no cure for COPD exists and therapy includes either symptomatic control or surgical intervention. Although lung transplantation offers the potential to improve quality of life, 2, 3 controversy exists as to whether lung transplantation in persons with COPD confers a survival benefit compared to medical treatment alone.4-7 As no single medical answer exists, the patient's personal values and preferences regarding their disease and treatment options play an important role in the decision-making process regarding lung transplantation. This decision is complex and informed decision making may be difficult for patients with low health literacy. The goal of this proposal is to develop a health-literacy sensitive decision aid that helps patients with COPD understand their treatment options and helps clarify their preferences and values regarding the choice between medical management and lung transplantation. Iterative design and usability testing of a low fidelity prototype will be conducted in patients who have previously made the decision to be listed for lung transplantation to develop a formal web-based decision aid. Patients with low health literacy will be oversampled and a user-centered approach will be employed to ensure a clear representation of the needs of patients with low health literacy. Next, usability and acceptability of a web-based decision aid will be assessed by applying similar methods with potential lung transplant candidates. Feasibility of implementing the health literacy-sensitive decision aid among patients with advanced COPD will be elucidated. The impact of the decision aid on individuals': 1) knowledge and risk perceptions, 2) clarity about values, and 3) decisional self- efficacy will be assessed. The results of the project will inform a multicenter randomized control trial of decision aid implementation. The use of human computer interaction methods in a population of users who are oversampled (at least 50%) for low health literacy may serve as a process map for the development of future health literacy-sensitive decision aids.

摘要 COPD影响超过5%的人口，是美国第三大最常见的死因。 1不幸的是，COPD没有治愈方法，治疗包括症状控制或 外科手术虽然肺移植提供了改善生活质量的潜力，但2，3争议 与药物治疗相比，COPD患者的肺移植是否能带来生存益处 4 -7由于没有单一的医学答案，患者的个人价值观和偏好 关于他们的疾病和治疗方案在决策过程中发挥着重要作用， 肺移植这一决定是复杂的，对于患有以下疾病的患者来说，做出明智的决定可能很困难。 健康素养低。 该提案的目标是开发一种健康素养敏感的决策辅助工具， COPD了解他们的治疗方案，并帮助澄清他们对选择的偏好和价值观 医疗管理和肺移植之间的联系迭代设计和可用性测试的低保真度 原型将在先前决定因肺部疾病上市的患者中进行 移植，以开发一个正式的基于Web的决策援助。健康素养低的患者将 将采用过采样和以用户为中心的方法，以确保清楚地反映 患者健康素养低。接下来，将评估基于网络的决策辅助工具的可用性和可接受性 通过对潜在的肺移植候选人应用类似的方法。实施卫生政策的可行性 将阐明晚期COPD患者中的识字敏感决策辅助。的影响 对个人的决策援助：1）知识和风险认知，2）价值观的清晰度，3）决策自我， 将评估疗效。 该项目的结果将告知决策辅助实施的多中心随机对照试验。 在过抽样的用户群体中使用人机交互方法（至少50%） 健康素养低的人可以作为未来健康素养敏感的发展的过程图 决策辅助