Functional Trajectories and Illness Experiences of Older Adults with Multiple Myeloma

多发性骨髓瘤是一种老年性疾病，确诊时的中位年龄接近70岁。大多数成年人患有 这种情况还有其他几种与年龄有关的健康状况，包括多种慢性病和 认知和功能限制。此外，骨髓瘤患者的生活质量远远低于 对于那些患有其他血癌的人。在这方面，患有多发性骨髓瘤的老年人的需求不同于 这是与其他癌症人群不同的重要途径。随着越来越多的新疗法可用于治疗 骨髓瘤，人们越来越迫切地需要了解这些治疗的益处和危害是如何形成的 功能能力、生活质量和疾病体验。先前的研究未能解释基线 (预处理)功能水平，通常侧重于传统的以疾病为中心的指标，如 生存和缓解状况，没有纳入可能对以下方面很重要的结果范围 病人。虽然特定于疾病的终点与患有骨髓瘤的老年人仍然高度相关，但更具全球性 针对疾病和治疗对整个人的影响的结果措施至关重要。因此 评估与老年人日益相关的功能和生活质量的测量是至关重要的，因为 这些都可以深刻地塑造疾病的体验。为了填补现有的知识空白，我提议进行一项试点 利用北卡罗来纳大学现有注册表NCT03717844进行的观察性研究， 莱恩伯格综合癌症中心。这项拟议的观察性研究将量化频率和 老年人认知功能和身体功能及生活质量下降的严重程度 诊断为多发性骨髓瘤(Aim1)；确定这些结果的预测因素(Aim 2)，并得出 老年骨髓瘤患者及其护理伙伴在疾病和护理方面的经验和观点 收到(目标3)。从这项先导观测研究中获得的知识将为设计一个更大的 一项观察性研究，将比较不同骨髓瘤治疗方案在老年人中的结果。这 数据还将为研究的设计提供信息，以开发和测试支持共享决策的干预措施 以及一种更个性化、更以人为中心的方法来护理患有多发性骨髓瘤的老年人。 这项拟议的研究是老年科、血液科和老年科之间的一项跨学科努力。 以及北卡罗来纳大学的老年肿瘤学项目。海曼·B·穆斯医学博士 (老年肿瘤学)将担任主要导师，额外导师由简·巴斯比-怀特黑德提供 MD(老年病学)，Tanya Wildes MD MSCI(老年血液学和定性研究)， Sascha Tuchman医学硕士(多发性骨髓瘤)，Timothy Ahles博士(神经认知)，Kirsten Nyrop博士 (定性研究)和Allison Deal MS(统计学)。

Multiple myeloma is a disease of aging, with a median age at diagnosis of almost 70 years. Most adults with this condition also have several other age-related health conditions, including multiple chronic conditions and cognitive and functional limitations. Furthermore, quality-of-life for patients with myeloma is much lower than for those with other blood cancers. In this respect, the needs of older adults with multiple myeloma differ in important ways from those of other cancer populations. With the increasing availability of new therapies to treat myeloma, there is a growing urgency to understand how the benefits and harms of these treatments shape functional capacity, quality-of-life, and the illness experience. Prior studies have failed to account for baseline (pretreatment) level of functioning and have generally focused on traditional disease-centric metrics such as survival and remission status and have not incorporated the range of outcomes that might be important to patients. While disease-specific endpoints remain highly relevant to older adults with myeloma, more global outcome measures addressing the impact of disease and treatment on the whole person are critical. Therefore evaluating measures of function and quality-of-life which are increasingly relevant to older adults is critical as these can profoundly shape the illness experience. To fill the existing knowledge gaps, I propose a pilot observational study leveraging an existing Registry NCT03717844 at the University of North Carolina, Lineberger Comprehensive Cancer Center. This proposed observational study will quantify the frequency and severity of decrements in cognitive and physical function and quality-of-life among older adults newly diagnosed with multiple myeloma (Aim1 ); identify predictors of these outcomes (Aim 2), and elicit the experiences and perspectives of older adults with myeloma and their care partners on illness and care received (Aim 3). Knowledge gained from this pilot observational study will inform the design of a larger observational study that will compare outcomes of different myeloma treatment regimens in older adults. This data would also inform the design of studies to develop and test interventions to support shared decision-making and a more individualized, person-centered approach to care for older adults with multiple myeloma. The proposed study is a transdisciplinary effort between the Divisions of Geriatrics, Hematology, and Oncology, and the Geriatric Oncology Program at the University of North Carolina. Hyman B. Muss MD (Geriatric Oncology) will serve as the Primary Mentor with additional mentorship provided by Jan Busby-Whitehead MD (Geriatrics), Dr. Tanya Wildes MD MSCI (Geriatric Hematology and Qualitative Research), Sascha Tuchman MD MHS (Multiple Myeloma), Timothy Ahles PhD (Neurocognition), Kirsten Nyrop PhD (Qualitative Research) and Allison Deal MS (Statistics).