QUALITY OF LIFE AND RELATIONSHIPS AFTER BMT

血液和骨髓移植(BMT)越来越多地被用于治疗各种癌症和非恶性疾病。越来越多的骨髓移植幸存者必须应对与他们的疾病和治疗以及重新进入社会的困难有关的压力，这种压力往往是强烈和长期的。现有的关于骨髓移植后生活质量(QOL)的研究存在一个或多个显著的概念或方法论缺陷，包括样本少、缺乏代表性、缺乏合适的对照、随访时间有限、未能评估心理成长的潜力和积极的心理社会结果、重要的临床数据与QOL数据对照的可获得性和使用有限，以及对QOL的全面评估不足。特别是，婚姻和其他重要关系中的人际功能还没有得到充分的研究，人们对配偶的生活质量知之甚少，因为配偶也是骨髓移植的幸存者。拟议的研究旨在解决这些限制。这项拟议的研究将描述通过国际骨髓移植登记中心(IBMTR)和自体血液和骨髓移植登记中心(ABMTR)招募的骨髓移植幸存者的生活质量、亲密关系质量和心理社会成长能力。一支经验丰富的BMT和QOL调查团队将采用问卷调查和电话采访相结合的方法。接受同种异体和自体骨髓移植的受者(n=800)，全部在骨髓移植后至少一年，以及许多人在骨髓移植后五年，将被研究。类似的信息将从配偶(n=200)和健康对照组(n=200)获得，并与BMT接受者的年龄、种族、性别和教育相匹配。使用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与压力相关的成长，并测试一个心理社会模型，以了解人口统计学和临床变量无法解释的差异。使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，研究对象为50名新患者，在基线(移植前)和出院后两周内进行。这项先导性研究将评估我们前瞻性收集患者的能力，获得序贯数据，并选择最合适的工具。来自这些研究的数据将加强我们对癌症和骨髓移植经历对长期生活质量、人际关系和个人成长的影响的理论理解，并确定最有可能出现负面生活质量结果的患者。这些信息对于随后规划和实施相关的、有针对性的干预措施至关重要，以最大限度地减少心理社会干扰，促进未来骨髓移植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.