Improving The Quality Of Advanced Cancer Care With Disease Management

描述(申请人提供)：晚期癌症患者需要接受以治愈为导向的治疗和姑息治疗。全国癌症综合网络(NCCN)将姑息治疗的目标确定为预防和缓解痛苦，无论疾病处于什么阶段，也不管姑息治疗是与延长生命的护理同时提供还是作为护理的主要重点。尽管认识到症状管理专业知识的重要性和对癌症经历的心理社会方面的关注，但患者继续发现姑息护理和临终护理方面的不足，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。重大改进需要护理提供系统的改变，以确保：(A)患者可以获得对身体、心理和精神需求的专家管理以及出色的治疗；(B)患者家属得到同样的专家支持；(C)可以联系到有技能和时间帮助患者及其家人的专业人员，使其能够随时从治疗的主要目标过渡到缓解的主要目标；以及(D)协调过渡到社区提供者，如家庭护理、姑息护理计划和临终关怀。越来越多的证据表明，疾病管理是一种能够具体满足这些需求的护理提供模式，尽管它从未在学术癌症中心进行过测试。这项调查的目的是实施全面的疾病管理计划(DMP)，衡量对晚期癌症患者及其家人的生活质量和护理质量的影响，并检查对资源使用的影响。将采用两组准实验串联招生设计。研究问题是：(1)参加DMP的晚期癌症患者与接受常规护理的晚期癌症患者在资源使用(生命最后30天的化疗次数、急诊室就诊次数、临终关怀和住院天数)方面是否存在差异？(2)参加DMP的晚期癌症患者的患者结果(与健康相关的生活质量、精神健康状况、对护理的满意度)与接受常规护理的患者是否存在差异？(3)护理者的结果(情绪状态、对护理的满意度、对生命末期护理的满意度)是否存在差异(4)在控制了人口、临床和组织协变量的影响后，患者和照顾者之间的差异是否仍然存在？(5)通过改善协作和解决问题，患者和照顾者之间的差异在多大程度上得以实现？

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?