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

了解与异基因移植后恢复过程中的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。现有的关于异基因造血干细胞移植成年幸存者康复的研究表明，许多患者在各种健康相关的生活质量(HRQL)领域都遇到了困难。一个尚未研究的关键问题是，在异基因造血干细胞移植后，结构域在多大程度上得到了改善，保持不变，甚至可能会恶化。 这项前瞻性的纵向研究是在研究参与者从移植之日起存活至少三年后进行的。该议定书将提供一种机制，以检查长期幸存者(异基因造血干细胞移植后3年)的健康状况和健康结果。在临床中心的年度移植随访中，患者被要求参与。 患者将在其年度移植随访的60天内，在第一个时间点之后大约每年进行一次评估。这与他们的医疗护理并行不悖，这将使今后有可能进行比较生物学和自我报告的康复标志的工作，例如自我报告的疲劳和甲状腺功能。问卷涉及的主题包括HRQL、功能状态、心理社会适应、症状困扰、疲劳、灵性和睡眠质量。 这项研究已经结束了登记，目前正在进行数据分析。227名HSCT幸存者进行了筛查，173人登记。结果将讨论它们对鼓励对异基因HSCT后恢复的现实期望以及干预措施的发展的影响。

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.