HRQOL-enhancing ostomy self-management intervention for CRC survivors

描述(由申请人提供)：我们的目标与NCI的战略目标是一致的，即提高癌症患者、幸存者及其家人的生活质量，以及医学研究所的慢性护理模式，该模式旨在通过规划、经过验证的策略和管理将目前的反应性医疗体系转变为尽可能保持患者健康的体系。结直肠癌(CRC)和其他需要行肠造口的癌症患者在应对他们的情况时面临许多障碍，尤其是医疗护理往往不能满足他们在自我护理、临床管理或心理支持方面的有效培训和信息需求。造口者和他们的家人必须进行造口管理，做出行为改变，并适应这种情况的后果。这可能包括家庭成员或朋友成为主要照顾者。患者和他们选择的照顾者的准备是确保最佳的HRQOL和功能所必需的。我们的主要目标是通过三家社区医院招募一组社区癌症患者，以测试慢性护理造口自我管理(CCOSM)计划的可行性、可接受性和可理解性，该计划由一名认证造口护理护士(COCN)和训练有素的同龄人造口“伙伴”推动。次要目标是：a)评估每个疗程的患者和护理者评级的有效性；b)在疗程结束时获得干预者对每个参与者每个疗程有效性的估计；c)使用离职访谈来评估计划的可接受性和满意度；d)评估特定造口的HRQOL评分与激活(PAM)量表分数和应对方式(方式)模式和分数之间的关系和相关性；e)衡量CCOSM计划成本和患者/家庭自掏腰包参与计划的费用；以及f)为更大规模的干预研究制定基础设施和战略。我们的长期目标是为结直肠癌和其他癌症幸存者启动一项随机、对照、多地点慢性护理造口自我管理计划干预研究。这项研究的最终目标是为结直肠癌和其他有新的肠造口的癌症患者开发一种有效的、令人满意的和可输出的护理系统，以便他们能够使用基于证据的、临床上和成本效益高的可持续造口管理计划，以及患者和家庭的教育和支持，维持他们最大的HRQOL和功能。重要的是，我们将为更大规模的干预研究建立基础设施。公共卫生相关性：这项研究的最终目标是为结直肠癌和其他有新的粪便肠造口的癌症患者开发一种有效、令人满意和易于使用的护理系统，以便他们能够使用基于证据的、临床上和成本效益高的可持续造口管理计划，以及患者和家庭的教育和支持，保持与健康相关的最高生活质量和功能。我们的目标遵循国家癌症研究所的战略目标，即改善癌症患者、幸存者及其家人的生活质量，以及医学研究所的慢性护理模式，该模式寻求将目前的反应性医疗体系转变为通过规划、经过验证的战略和管理来尽可能保持患者健康的体系。

DESCRIPTION (provided by applicant): Our aims are consonant with the NCI's strategic objective to improve the quality of life for cancer patients, survivors, and their families, as well as with the Institute of Medicine's Chronic Care Model, which seeks to transform what is currently a reactive health care system into one that keeps patients as healthy as possible through planning, proven strategies and management. Colorectal cancer (CRC) and other cancer patients who are required to undergo intestinal ostomies, face many obstacles in coping with their condition, not least of which is medical care that often does not meet their needs for effective training and information regarding self-care, clinical management, or psychological support. Ostomates and their families must engage in ostomy management, make behavioral changes, and adjust to the consequences of this condition. This may include a family member or friend becoming the principal caretaker. Preparation of the patient and their chosen caregiver is requisite to assure optimal HRQOL and functioning. Our primary aim is to recruit a group of community cancer patients through three community hospitals to test the feasibility, acceptability, and comprehensibility of a Chronic Care Ostomy Self-Management (CCOSM) Program facilitated by a certified ostomy care nurse (COCN) and trained peer-ostomate "buddies". Secondary aims are to: a) evaluate the patient- and caregiver-rated effectiveness of each session; b) obtain interventionists' estimates of the effectiveness of each session for each participant at the end of the sessions; c) use exit interviews to evaluate the acceptability of, and satisfaction with, the program; d) evaluate relationships and correlations between ostomy-specific HRQOL scores and both Activation (PAM) scale scores and Ways of Coping (WAYS) patterns and scores; e) measure CCOSM program costs and patient/family out of pocket expenses to participate in the program; and f) develop the infrastructure and strategy for a larger intervention study. Our long term objectives are to initiate a randomized, controlled, multi-site Chronic Care Ostomy Self-Management Program intervention study for CRC and other cancer survivors. The ultimate goal of this research is to develop an effective, satisfying and exportable system of care for CRC and other cancer patients with new intestinal stomas so that they can maintain their maximum HRQOL and functioning, using an evidence-based, clinically and cost-effective, sustainable ostomy-management program, incorporating "buddy" peers, along with patient and family education and support. Importantly, we will create the infrastructure for a larger intervention study. PUBLIC HEALTH RELEVANCE: The ultimate goal of this research is to develop an effective, satisfying and easily usable system of care for colorectal and other cancer patients with new fecal intestinal stomas so that they can maintain their maximum health-related quality of life and functioning, using an evidence-based, clinically and cost-effective, sustainable ostomy-management program, incorporating "buddy" peers, along with patient and family education and support. Our aims follow the National Cancer Institute's strategic objective to improve the quality of life for cancer patients, survivors, and their families, as well as with the Institute of Medicine's Chronic Care Model, which seeks to transform what is currently a reactive health care system into one that keeps patients as healthy as possible through planning, proven strategies and management.