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.
