Improving The Quality Of Advanced Cancer Care With Disease Management

描述（由申请人提供）：晚期癌症患者需要获得以治愈为导向的治疗和姑息治疗。国家综合癌症网络（NCCN）将姑息治疗的目标确定为预防和减轻痛苦，而不考虑疾病的阶段，也不考虑姑息治疗是与延长生命治疗同时提供，还是作为治疗的主要重点。尽管认识到症状管理专业知识的重要性和对癌症经历的社会心理方面的关注，但患者继续发现姑息治疗和临终关怀的缺点，包括缺乏协调和沟通，难以获得护理，症状管理不足以及死亡过程延长。重大改进需要改变护理提供系统，以确保：(a)患者能够获得专家对身体、心理和精神需求的管理以及出色的治疗；(b)患者家属得到同样的专家支持；(c)能够随时获得专业人员的帮助，这些专业人员具备技能和时间，可以帮助患者及其家属从治愈的主要目标过渡到缓和的主要目标；(d)协调过渡到社区提供者，如家庭护理、姑息治疗项目和临终关怀发生。越来越多的证据表明，疾病管理是一种能够专门解决这些需求的护理交付模式，尽管它从未在学术癌症中心进行过测试。本研究的目的是实施综合疾病管理计划（DMP），衡量对晚期癌症患者及其家属生活质量和护理质量的影响，并探讨对资源利用的影响。采用两组准实验串联入组设计。研究问题是：(1)参与DMP的晚期癌症患者与接受常规治疗的患者相比，在资源使用（生命最后30天内化疗次数、急诊室就诊次数、安宁疗护和住院天数）方面是否存在差异？(2)与接受常规护理的晚期癌症患者相比，参加DMP的患者的预后（健康相关的生活质量、精神健康、护理满意度）是否有差异？(3)参与DMP的晚期癌症患者的照护者与接受常规照护者在照护者结局（情绪状态、照护满意度、临终关怀满意度和照护负担）方面是否存在差异？(4)在控制了人口统计学、临床和组织协变量的影响后，患者和护理者结局的差异是否仍然存在？(5)通过协作和解决问题的改进，在多大程度上实现了患者和护理人员结果的差异？

DESCRIPTION (provided by applicant): Patients with advanced stage cancer have need for access to both cure-oriented therapies and palliation. The National Comprehensive Cancer Network (NCCN) identifies the goal of palliative care as the prevention and relief of suffering regardless of the stage of disease and regardless of whether palliative care is provided concurrently with life-prolonging care or as the main focus of care. Despite recognition of the importance of symptom management expertise and attention to the psychosocial aspects of the cancer experience, patients continue to identify shortcomings in palliative care and end-of-life care, including lack of coordination and communication, difficulty accessing care, inadequate symptom management, and prolongation of the dying process. Significant improvements require changes in the care delivery system in order to assure that: (a) patients have access to expert management of physical, psychological, and spiritual needs as well as excellent curative therapy (b) families of patients receive the same expert support; (c) access to professionals who have the skills and time to assist patients and their families make the transition from a primary goal of cure to a primary goal of palliation is readily available; and (d) a coordinated transition to community providers, such as home care, palliative care programs, and hospice occurs. There is growing evidence that disease management is a care delivery model that is able to specifically address these needs, although it has never been tested in an academic cancer center. The purpose of this investigation is to implement a comprehensive disease management program (DMP) and measure effects on quality of life and quality of care of advanced cancer patients and their families, and to examine the effects on resource use. A two-group, quasi-experimental, tandem enrollment design will be used. Research questions are: (1) Is there a difference in resource use (number of chemotherapy treatments in the last 30 days of life, number of emergency room visits, number of days of hospice and hospitalization) among patients with advanced cancer who have participated in a DMP compared to those receiving usual care? (2) Is there a difference in patient outcomes (health related quality of life, spiritual well being, satisfaction with care) among patients with advanced cancer who have participated in a DMP compared to those receiving usual care? (3) Is there a difference in caregiver outcomes (mood state, satisfaction with care, satisfaction with end of life care, and burden of caregiving) among caregivers of patients with advanced cancer who have participated in a DMP compared to those receiving usual care? (4) Do the differences in patient and caregiver outcomes remain after controlling for the influence of demographic, clinical and organizational covariates? (5) To what extent are differences in patient and caregiver outcomes achieved through improvements in collaboration and problem solving?