DISCREPANCIES BETWEEN PATIENT AND PUBLIC UTILITY RATINGS

患者和公共事业评级之间的差异

• 批准号: 6536389
• 负责人: PETER A UBEL
• 金额: $ 40.3万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2000
• 资助国家: 美国
• 起止时间: 2000-09-28 至 2005-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6536389
• 关键词: attitude; behavioral /social science research tag; clinical research; data collection methodology /evaluation; decision making; disabling disease; functional ability; health care policy; health economics; human subject; interview; judgment; longitudinal human study; outcomes research; patient care management; patient care planning; person with disability; physicians; psychological adaptation; public opinion; quality of life; social adjustment

This re-application addresses an issue fundamental to health care and cost-effectiveness analysis: how disease appears to those who have it and those who do not. The principal investigator does not describe specific aims but identifies the "primary purposes" of the proposed project as follows: 1) To obtain ratings of the utility of various health conditions from patients who have those conditions and from nonpatients, and to examine discrepancies between the two groups, 2) To explore possible reasons for these discrepancies; and 3) to test how alternative utility measures affect the size and direction of the discrepancy, and the reliability and validity of utility assessment. The investigators propose 6 projects to pursue the three purposes and have established some general methods. These methods include identification of unaffected individuals by random digit dialing among people living in the catchment area for the University of Pennsylvania Health System (UPHS). Affected individuals will be identified through a data system used by the UPHS. All studies involve surveys. In 5 studies (#1,3,4,5,6) individuals will be surveyed by telephone, and in one study (#2) the interviews occur face to face. Each study will begin with a pilot phase when instruments and techniques are clarified. Then data collection, and analysis occur. The studies overlap in time but the pilot phases are sequential. A contract firm (TNS Intersearch) will conduct the surveys. The methods for each study will be the same for affected (patients) and unaffected (non-patients) individuals. The measures for all studies include utilities, quality of life, comorbidity, and demographic characteristics. Each study explores an aspect of the discrepancy between how affected and unaffected individuals estimate the utility of a disease. The investigators will measure utilities in three ways as noted below but in all studies they will use one common numeric rating from 0 (death) to 1 (complete health). The specific studies will vary how they measure utilities such that every study except #6 will include at least two utility measurements in affected and unaffected individuals. Quality of life will be measured using the SF-12 and the use of this shortened form is well justified by the research team. Comorbidity measurement will occur using a survey adaptation of the Charlson index. The studies themselves are described briefly below. Study 1 will evaluate how disease utilities change over time in the disease condition. Unaffected individuals will be asked to evaluate the utility at different points in time-since-diagnosis. The investigators will compare these estimates to those made by a longitudinal sample of newly diagnosed patients, and cross sectional samples of other patients. Study 2 will use in-person interviews to evaluate how subjective well being differs from severity of illness. The investigators will randomize subjects into one of three groups that will then be asked to rate conditions on an unanchored (eg. 1-100), anchored (0=death, 100= full health), and two rating scales the individual develops. The individually developed scales will be based first on the severity of the disease, and then on the happiness the person would experience if they had that disease. Study 3 will evaluate the effect of focusing on how the condition will affect certain activities while ignoring how it will not affect others. Affected and unaffected individuals will be randomized to one of two groups and given descriptions of a condition. The affected individuals will be given a description of their illness in a specific state of severity. Individuals randomized to one group will start by rating the utility of the condition, then rate the importance of several life domains (i.e. recreation, work etc.) and the effect of the condition on those domains (de-focusing). Finally they will re-rate the utility of the condition. The individuals randomized to the second group will not provide the initial utility rating. Study 4 will test how descriptions of conditions affect the utilities identified by affected and unaffected individuals. The investigators will collect verbal descriptions of diseases by patients with those conditions and by their physicians. The descriptions will be written out and then used in the study. Study 5 will test the effect of asking individuals to rate diseases as if they had them or as if some other person had them. Study 6 will test how the verifiability of a condition (ease with which it can be explained), the uncertainty of the prognosis, and the diffuse or narrow effects of the conditions influence the utilities assigned. In all six studies the authors propose specific hypotheses for the how affected and unaffected individuals will differ in their estimates of utilities. In most cases the hypotheses will be tested using two-way ANOVA with elicitation method and respondent population as the factors, and the significance of an interaction between respondent population and elicitation method as the statistical test. It is not clear how the quality of life, and comorbidity measures will be used in these models.

这次重新申请解决了医疗保健的一个基本问题 成本效益分析：疾病对患者的表现如何以及 那些不这样做的人。 主要研究者没有描述具体目标，但确定了 拟议项目的“主要目的”如下： 1) 获得评级 患有这些疾病的患者的各种健康状况的效用 条件和非患者，并检查两者之间的差异 2）探索这些差异的可能原因； 3）测试 替代性公用事业措施如何影响电力的规模和方向 差异，以及效用评估的信度和效度。 研究人员提出了 6 个项目来实现这三个目的，并已 制定了一些通用方法。这些方法包括识别 居住在该地区的人中未受到随机数字拨号影响的个人 宾夕法尼亚大学医疗系统 (UPHS) 的服务区。 受影响的个人将通过该机构使用的数据系统进行识别。 UPHS。 所有研究都涉及调查。 在 5 项研究 (#1,3,4,5,6) 中 将通过电话进行调查，在一项研究 (#2) 中，访谈是面对面进行的 去面对。 每项研究都将从试验阶段开始，届时仪器和技术都已成熟 澄清。然后进行数据收集和分析。 这些研究重叠于 但试点阶段是连续的。合同公司（TNS Intersearch） 将进行调查。每项研究的方法都是相同的 受影响的（患者）和未受影响的（非患者）个体。 所有研究的衡量标准包括效用、生活质量、合并症、 和人口特征。每项研究都探讨了一个方面 受影响和未受影响的个人估计的差异 疾病的效用。研究人员将通过三种方式衡量效用 如下所述，但在所有研究中，他们将使用一个共同的数字评级 0（死亡）到 1（完全健康）。具体的研究将有所不同 衡量效用，使得除了 #6 之外的每项研究都将至少包括两项 受影响和未受影响个体的效用测量。生活质量 将使用 SF-12 进行测量，并且使用这种缩写形式是很好的 经研究小组论证。 合并症测量将使用 查尔森指数的调查改编。 下面简要描述了这些研究本身。 研究 1 将评估疾病效用如何随时间变化 健康）状况。未受影响的个人将被要求评估效用 自诊断以来的不同时间点。调查人员将比较这些 对新诊断患者的纵向样本进行的估计， 以及其他患者的横截面样本。 研究 2 将使用面对面访谈来评估主观幸福感 与疾病的严重程度不同。研究人员将随机分配受试者 分为三组之一，然后将被要求对条件进行评级 非锚定（例如 1-100）、锚定（0=死亡，100=完全健康）和两个评级 衡量个人的发展。单独开发的量表将是 首先根据疾病的严重程度，然后根据患者的幸福程度 如果人们患有这种疾病，他们就会经历。 研究 3 将评估关注病情如何影响的效果 某些活动而忽略它如何不会影响其他活动。受影响和 未受影响的个体将被随机分配到两组中的一组并给予 条件的描述。受影响的个人将获得 对他们的疾病处于特定严重程度的描述。个人 随机分配到一组将首先对条件的效用进行评级， 然后评估几个生活领域（即娱乐、工作等）的重要性 以及条件对这些域的影响（散焦）。最后他们 将重新评估该条件的效用。这些个体被随机分配到 第二组将不提供初始效用评级。 研究 4 将测试条件描述如何影响公用事业 由受影响和未受影响的个人识别。调查人员将 收集患有这些疾病的患者对疾病的口头描述，并 由他们的医生。这些描述将被写出来，然后在 学习。 研究 5 将测试要求个人对疾病进行评级的效果，就像他们对疾病进行评估一样 拥有它们或好像其他人拥有它们。 研究 6 将测试条件的可验证性（它可以轻松地 解释），预后的不确定性，以及弥漫性或狭窄性 条件的影响会影响分配的效用。 在所有六项研究中，作者提出了具体的假设 受影响和未受影响的个人的估计会有所不同 公用事业。在大多数情况下，将使用双向方差分析来检验假设 以启发法和受访人群为因素， 受访人群与启发之间相互作用的重要性 方法作为统计检验。目前还不清楚生活质量如何 这些模型将使用合并症测量。