Prophylactic colectomy intentions in HNPCC patients

描述(由申请人提供)： 遗传性非息肉病性结直肠癌(HNPCC)与罹患结直肠癌的终生风险高达80%，部分结肠切除后发生异时性肿瘤的可能性高达40%至50%。对于这些患者，预防性结肠切除术已被提议作为一种潜在的风险管理替代方案，以取代终生通过结肠镜进行密集监测。在个性化遗传咨询服务的发展中，风险管理决策的高度个人化已被认识到。然而，之前在这一领域的心理社会研究倾向于使用线性统计技术，其中临床上重要的细节在过于广泛的、一刀切的模型中丢失，很难应用于一对一的咨询会议。我们提出了一种基于认知-社会健康信息处理(C-SHIP)模型的创新方法，在该模型中，我们将探索这些因素是如何被组织成有意义的模式或类型的，这些模式或类型可以很容易地转化为定制的咨询建议。这项研究的具体目的是：1)评估HNPCC患者对预防性结肠切除术的兴趣水平；2)根据预防性结肠切除术的利弊特征，确定不同的决策类型；以及3)探索决策类型与咨询相关结果(对结肠切除术的兴趣水平、癌症特异性焦虑和结肠镜检查依从性)之间的关系模式。我们将对320名HNPCC患者(定义为与HNPCC相关的错配修复基因突变携带者或有符合已公布的HNPCC标准的个人或家族病史)进行一次性电话调查。使用聚类分析，我们将创建决策类型的分类法。先前的研究让我们预计至少有三种类型：不投入、专注于风险和矛盾。我们假设，每种类型与结果变量的关系模式都不同(例如，关注风险的类型将表现出对手术的高兴趣、高焦虑、低回避和高结肠镜坚持，而矛盾型将表现出对手术的高兴趣、高焦虑、高回避和低结肠镜坚持)。了解这些模式将提高医生、遗传咨询师和其他提供者的能力，帮助他们的患者做出知情的、深思熟虑的决定，制定预防策略，最好地保护他们的健康、情绪健康和生活质量。

DESCRIPTION (provided by applicant): Hereditary non-polyposis colorectal cancer (HNPCC) is associated with up to an 80 percent lifetime risk of developing colorectal cancer and a 40 to 50 percent chance of a metachronous tumor after partial colectomy for the disease. For these patients, prophylactic colectomy has been proposed as a potential risk management alternative to a lifetime of intensive surveillance by colonoscopy. The highly personal nature of risk management decisions has been recognized in the development of individualized genetic counseling services. However, prior psychosocial research in this area has tended to use linear statistical techniques in which clinically important details are lost in an overly broad, one-size-fits-all model that is difficult to apply in a one-to-one counseling session. We propose an innovative approach based on the Cognitive-Social Health Information Processing (C-SHIP) model in which we will explore how these factors are organized into meaningful patterns or types that can translate readily into tailored counseling recommendations. Specific aims of this study are: 1)To assess levels of interest in prophylactic colectomy among HNPCC patients; 2) To identify distinctive decision types based on profiles of perceived pros and cons of prophylactic colectomy; and 3) To explore the pattern of relations between decision types and counseling-related outcomes (level of interest in colectomy, cancer-specific anxiety, and colonoscopy adherence). We will conduct a one-time cross-sectional telephone survey of 320 HNPCC patients (defined as either carriers of a mutated mismatch repair gene associated with HNPCC or those with a personal or family history meeting published criteria for HNPCC). Using cluster analysis we will create a taxonomy of decision types. Prior research leads us to expect at least three types: Disengaged, Risk-Focused, and Ambivalent. We hypothesize that each type will have a different pattern of relations with the outcome variables (e.g., Risk-focused types will show high interest in surgery, high anxiety, low avoidance, and high colonoscopy adherence, whereas Ambivalent types will show high interest in surgery, high anxiety, high avoidance, and low colonoscopy adherence). Understanding these patterns will enhance the ability of physicians, genetic counselors, and other providers to help their patients make well-informed, thoughtful decisions about the preventive strategy that will best protect their health, emotional well-being, and quality of life.