Functional Trajectories and Illness Experiences of Older Adults with Multiple Myeloma

多发性骨髓瘤是一种衰老性疾病，诊断时的中位年龄几乎为70岁。大多数成年人 这种情况也有其他几个与年龄有关的健康状况，包括多种慢性疾病， 认知和功能限制。此外，骨髓瘤患者的生活质量远低于 对于其他血癌患者。在这方面，老年多发性骨髓瘤患者的需求不同， 与其他癌症人群不同的重要途径。随着越来越多的新疗法来治疗 骨髓瘤，有越来越多的紧迫性，以了解这些治疗的好处和危害如何形成 功能能力、生活质量和疾病经历。先前的研究未能解释基线 （治疗前）功能水平，通常侧重于传统的以疾病为中心的指标，如 生存和缓解状态，并没有纳入一系列的结果，可能是重要的， 患者虽然疾病特异性终点与老年骨髓瘤患者高度相关，但更多的全球性研究表明， 处理疾病和治疗对整个人的影响的成果措施至关重要。因此 评估与老年人日益相关的功能和生活质量的措施至关重要， 这些可以深刻地塑造疾病体验。为了填补现有的知识空白，我建议进行一次试点 利用北卡罗来纳州大学现有登记研究NCT 03717844的观察性研究， Lineberger综合癌症中心这项拟议的观察性研究将量化频率， 老年人认知和身体功能以及生活质量下降的严重程度 诊断为多发性骨髓瘤（Aim 1）;确定这些结果的预测因素（Aim 2），并引出 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 目标3（Aim 3）从这项试点观察性研究中获得的知识将为设计一个更大的 这是一项观察性研究，将比较老年人不同骨髓瘤治疗方案的结局。这 数据还将为研究设计提供信息，以开发和测试干预措施，支持共同决策 以及一种更加个性化、以人为本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病学、血液学和 肿瘤学和北卡罗来纳州大学老年肿瘤学项目。海曼B。Muss MD （老年肿瘤学）将担任主要导师，由Jan Busby-Whitehead提供额外导师 医学博士（老年病学），博士Tanya Wildes医学博士MSCI（老年血液学和定性研究）， Sascha Tuchman MD MHS（多发性骨髓瘤），Timothy Ahles PhD（神经认知），Kirsten Nyrop PhD （定性研究）和艾莉森交易MS（统计）。

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).