QUALITY OF LIFE AND RELATIONSHIPS AFTER BMT

血液和骨髓移植（BMT）越来越多地用于治疗各种癌症和非恶性疾病。越来越多的BMT幸存者必须应对与他们的疾病和治疗有关的压力，这些压力往往是强烈和慢性的，以及重新进入社会的困难。现有的BMT后生活质量（QOL）研究存在一个或多个显著的概念或方法缺陷，包括样本小、不具代表性、缺乏合适的对照、随访时间有限、未能评估心理成长和积极心理社会结局的潜力、重要临床数据与QOL数据核对的可用性和使用有限，以及对QOL的评估不够全面。特别是，婚姻和其他重要关系中的人际功能研究不足，对同样是BMT幸存者的配偶的生活质量知之甚少。拟议的研究旨在解决这些限制。拟议的研究将描述通过国际骨髓移植登记处（IBMTR）和自体血液和骨髓移植登记处（ABMTR）招募的BMT幸存者的生活质量、亲密关系质量和心理社会成长能力。由经验丰富的BMT和生活质量调查员组成的团队将采用问卷调查和电话访谈相结合的方法。我们将研究同种异体和自体骨髓移植的受者（n=800），他们在骨髓移植后至少1年，许多人在骨髓移植后5年。将从配偶（n=200）和健康对照（n=200）获得类似信息，并根据年龄、种族、性别和教育程度对BMT接受者进行匹配。利用IBMTR/ABMTR提供的独特临床信息数据库，我们将分析人口统计学和临床因素与生活质量结果变化的关系。我们将评估这些幸存者的人际关系和压力相关的成长，并测试一个社会心理模型，以了解人口统计学和临床变量无法解释的差异。利用这项大型横断面研究的数据，我们将设计和试点一项前瞻性研究，纳入50名基线（移植前）和出院后两周内的新患者。试点研究将评估我们的能力，积累患者的前瞻性，获得顺序数据，并选择最合适的工具。这些研究的数据将增强我们对癌症和BMT经历对长期生活质量、人际关系和个人成长的影响的理论认识，并识别出生活质量负面结果风险最大的患者。这些信息对于后续规划和实施相关的、目标明确的干预措施至关重要，以尽量减少心理社会障碍，并促进未来BMT接受者及其亲人的成长。

Blood and marrow transplantation (BMT) is increasingly used to treat a variety of cancers and non-malignant disorders. Growing numbers of BMT survivors must cope with the stresses, often intense and chronic, associated with their disease and treatment as well as the difficulty of re-entry into society. Existing studies of quality of life (QOL) after BMT suffer from one or more significant conceptual or methodologic shortcomings including small, unrepresentative samples, lack of suitable controls, limited length of follow-up, failure to assess the potential for psychological growth and positive psychosocial outcomes, limited availability and use of important clinical data for collation with QOL data, and less than comprehensive assessment of QOL. In particular, interpersonal functioning in marital and other significant relationships is understudied and little is known about the QOL of the spouse, who is also a BMT survivor. The proposed study is designed to address these limitations. The proposed study will characterize the QOL, quality of close relationships, and capacity for psychosocial growth of BMT survivors recruited through the International Bone Marrow Transplant Registry (IBMTR) and Autologous Blood and Marrow Transplant Registry (ABMTR). A combination of questionnaire and telephone interview methods will be used by an experienced team of BMT and QOL investigators. Recipients of allogeneic and autologous BMT (n=800), all at least one year post-BMT and many > 5 years post-BMT, will be studied. Similar information will be obtained from spouses (n=200) and healthy controls (n=200), matched with BMT recipients for age, race, gender and education. Using a unique database of clinical information available through the IBMTR/ABMTR, we will analyze demographic and clinical factors for their association with variations in QOL outcomes. We will evaluate interpersonal relationships and stress-related growth in these survivors and test a psychosocial model to understand differences unexplained by demographic and clinical variables. Using data from this large cross-sectional study, we will design and pilot a prospective study of 50 new patients at baseline (pre-transplant) and within two weeks after hospital discharge. The pilot study will evaluate our ability to accrue patients prospectively, obtain sequential data, and select the most appropriate instruments. Data from these studies will enhance our theoretical understanding of the impact of the cancer and BMT experience on long-term QOL, interpersonal relationships, and personal growth as well as identify patients at greatest risk for negative QOL outcomes. This information is essential to subsequent planning and implementation of relevant, well-aimed interventions to minimize psychosocial disruption and enhance growth in future BMT recipients and their loved ones.