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

了解与异基因移植后恢复变异性相关的因素可以增加患者最终恢复正常，富有成效的生活的可能性。关于同种异体HSCT的成年幸存者的恢复的现有研究表明，许多患者在各种健康相关生活质量（HRQL）领域中经历困难。一个关键的问题，这仍然是未经审查的领域改善的程度，保持静态，甚至可能恶化后，随着时间的推移同种异体造血干细胞移植。 这项前瞻性纵向研究的研究参与者一旦从移植之日起存活至少三年。 该方案将提供一种机制来检查长期存活者（同种异体HSCT后3年）的健康状况和健康结局。患者在临床中心的年度移植随访期间参与。 在每年移植随访的60天内，在第一个时间点之后，大约每年对患者进行一次评价。这与他们的医疗护理平行，将允许在未来进行潜在的工作，比较生物学和自我报告的恢复标志物，例如自我报告的疲劳和甲状腺功能。 问卷涉及HRQL、功能状态、心理社会调整、症状困扰、疲劳、精神和睡眠质量等主题。 该研究已关闭入组，目前正在进行数据分析。227 HSCT幸存者进行了筛选和173入组。结果将讨论他们的影响，鼓励现实的期望恢复后，异基因HSCT以及干预的发展。

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.