Long Term Quality of Life Outcomes in Patients Treated with Allogeneic HSCT

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Understanding of factors associated with variability in recovery following allogeneic transplant can increase the likelihood that patients will ultimately return to a normal, productive life. Existing research regarding the recovery of adult survivors of allogeneic HSCT indicates that many patients experience difficulties in a variety of Health Related Quality of Life (HRQL) domains. A critical issue which has remained unexamined concerns the extent to which domains improve, remain static, or perhaps even deteriorates with the passage of time after allogeneic HSCT. This prospective longitudinal study accrues research participants once they have survived a minimum of three years from date of transplant. The protocol will provide a mechanism to examine the health status and health outcomes of long term survivors ( 3 years following allogeneic HSCT). Patients are approached for participation during their annual transplant follow-up at the Clinical Center. Patients will be evaluated at approximately yearly intervals beyond the first time point within 60 days of their annual transplant follow-up. This parallel with their medical care will allow for potential work in the future comparing biological and self-reported markers of recovery e.g. self-reported fatigue and thyroid function. Questionnaires address topics such as HRQL, functional status, psychosocial adjustment, symptom distress, fatigue, spirituality and sleep quality. The study has closed to enrollment and is currently undergoing data anlaysis. 227 HSCT survivors were screened and 173 enrolled.Results will be discussed with respect to their implications for both the encouragement of realistic expectations for recovery following allogeneic HSCT as well as the development of intervention.