END OF LIFE PREFERENCES & OUTCOMES: PATIENTS & SPOUSES

生命终结偏好

基本信息

批准号：
6930910
负责人：
RACHEL A PRUCHNO
金额：
$ 60.31万
依托单位：
UNIV OF MED/DENT NJ-SCH OSTEOPATHIC MED
依托单位国家：
美国
项目类别：
财政年份：
2000
资助国家：
美国
起止时间：
2000-09-05 至 2008-02-29
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/6930910
关键词：
behavioral /social science research tag chronic renal failure clinical research grief human subject interview preference spouses terminal patient care

项目摘要

Proposed is a prospective longitudinal study of: (1) the end of life preferences for treatment held by patients with chronic illness and their spouses; (2) the ways that end of life preference of patients and spouses change over the course of a chronic illness; and (3) the effects that end of life preferences and actual administration of various end of life treatments have on the sense of burden, grief, and mental health of the patient's spouse. The overall goal of the study is to gain better understanding of the preferences for end of life treatment and the effects of such preferences within the contexts of both the marital dyad and the course of chronic disease. Grounded in family stress theory, the central hypotheses to be tested are: (1) Patient and spouse preferences for end of life treatment vary directly as a function of perceptions of quality of patient life and indirectly as a function of the stressors (e.g., physical health and functional ability of the patient) and resources (religious/spiritual, marital relationship, social support) of patients and their spouses; (2) The greater the congruence between patient and spouse regarding end of life preferences, the less the sense of burden the spouse will feel. Reduced burden, in turn, results in better mental health for the spouse; (3) Over the course of disease, as quality of life declines, preferences for treatment will change from those focused on aggressive treatment to those that are more palliative; (4) The greater the degree of spouse congruence regarding preferences for end of life treatment and the greater the extent of congruence between preferences for treatment and actual end of life treatment administered, the less grief will be experienced by the spouse after the death of the patient and the better will be the mental health of the spouse. In order to address these hypotheses, a five-year prospective longitudinal study design is proposed. 325 patients with ESRD and their spouses would be assessed comprehensively at baseline and then briefly at four times (9, 18, 27, 36 months) over the course of the three years. Spouses who become widowed during the observation period would participate in a single post-death interview. Analyses would focus on both cross-sectional and prospective longitudinal relationships using a combination of a regression, structural equation modeling, and categorical data analysis techniques.

提议进行一项前瞻性纵向研究：(1) 慢性病患者治疗的生活偏好及其配偶； (2)患者及配偶临终偏好的方式慢性疾病过程中的变化； (3) 结束的影响生活偏好和各种临终治疗的实际管理影响患者配偶的负担感、悲伤感和心理健康。该研究的总体目标是更好地了解对临终治疗的偏好以及这种偏好的影响在婚姻二元关系和慢性病病程的背景下。以家庭压力理论为基础，要检验的中心假设是：（1）患者和配偶对临终治疗的偏好各不相同患者生活质量感知的函数，间接作为函数压力源（例如患者的身体健康和功能能力）和资源（宗教/精神、婚姻关系、社会支持）患者及其配偶； (2)患者与患者之间的一致性越大配偶对于临终的偏好，负担感越小配偶会感觉到。减轻负担反过来又会带来更好的心理健康配偶； (3) 在疾病过程中，随着生活质量的下降，治疗偏好将从那些专注于攻击性的对那些较为姑息的患者进行治疗； (4) 度数越大配偶对于临终治疗的偏好以及治疗偏好与实际情况之间的一致性程度更大进行临终治疗时，患者所经历的悲伤越少患者去世后配偶的心理健康状况会更好配偶的。为了解决这些假设，我们进行了一项为期五年的前瞻性研究提出了纵向研究设计。 325名终末期肾病患者及其配偶将在基线时进行全面评估，然后分四次进行简要评估三年期间（9、18、27、36 个月）。配偶成为观察期内丧偶者将参加单次死亡后面试。分析将侧重于横截面和前瞻性使用回归、结构的组合的纵向关系方程建模和分类数据分析技术。