QUALITY-OF-LIFE OF 125 ADULTS SURVIVING 6-18 YEARS AFTER BONE-MARROW TRANSPLANTATION
QUALITY-OF-LIFE OF 125 ADULTS SURVIVING 6-18 YEARS AFTER BONE-MARROW TRANSPLANTATION
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DOI：
10.1016/0277-9536(94)00153-k
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发表时间：
1995-02-01
影响因子：
5.4
通讯作者：
SULLIVAN, KM
中科院分区：
文献类型：
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作者：
BUSH, NE;HABERMAN, M;SULLIVAN, KM
背景：最近对骨髓移植的医学和心理社会后遗症进行的研究表明，大多数幸存者的情况相对较好，而一小部分人的生活质量（QOL）仍然低于最佳水平。其中许多研究受到样本量小、范围有限以及关注狭窄（1-4 年）生存期的限制。 方法：描述性调查检查了 125 名骨髓移植后存活 6-18（平均 10）年的成年人的生活质量、晚期医疗并发症、心理困扰、长期康复需求和健康认知。 7项大范围测试，涵盖271个项目，平均在90分钟内完成。作者专门开发了两项测试来评估该人群的生活质量。结果：74% 的骨髓移植长期幸存者表示，他们当前的生活质量与移植前相同或更好，80% 的人认为他们当前的健康状况和生活质量为良好至优秀，88% 的人表示移植的好处超过了副作用。移植后十年或更长时间，长期幸存者继续经历中等程度的挥之不去的并发症和需求，包括情绪和性功能障碍、疲劳、眼部问题、睡眠障碍、全身疼痛和认知功能障碍。然而，对于大多数幸存者来说，这些并发症造成的痛苦的严重程度或程度始终较低。几乎所有人都回到了工作或学校。只有 5% 的人认为自己的生活质量和健康状况都很差。与癌症和人群正常情况相比，长期幸存者表现出良好的情绪和较低的心理困扰，并且对当前健康状况和对未来健康的期望与普通人群具有相同的看法。长期生存的需求似乎并没有带来什么困难。最常被提及的康复需求是随着时间的推移，人们认为缺乏社会支持。结论：几乎所有长期幸存者都过着充实而有意义的生活。总体而言，持续的并发症被视为相对微不足道，绝大多数人认为自己已经治愈并且状况良好。
Background: Recent studies examining the medical and psychosocial sequelae of bone marrow transplantation have reported most survivors do relatively well while a smaller group continues to experience less than optimal quality of life (QOL). Many of these studies are limited by small sample sizes, limited scope, and focus on a narrow (1-4 year) window of survival.Methods: The descriptive survey examined the QOL, late medical complications, psychological distress, demands of long-term recovery, and health perceptions of 125 adults surviving 6-18 (mean 10) years after marrow transplantation. Seven wide-ranging tests covering 271 items were completed on average in 90 min. Two tests were developed by the authors specifically for assessing QOL in this population.Results: 74% of long-term survivors of bone marrow transplantation reported their current QOL was the same or better than before transplantation, 80% rated their current health status and QOL as good to excellent, and 88% said the benefits of transplantation outweighted the side effects. Ten years or more post-transplantation, long-term survivors continued to experience a moderate incidence of lingering complications and demands, including emotional and sexual dysfunction, fatigue, eye problems, sleep disturbance, general pain and cognitive dysfunction. However, the severity or degree of distress attributed to those complications was, for most survivors, consistently low. Nearly all were back to work or school. Only 5% rated both their QOL and health status as poor. Long-term survivors demonstrated good mood and low psychological distress compared to cancer and population norms, and had the same perceptions as the general population of their current health and expectation of future health. Demands attributed to long-term survival appeared to impose little hardship. The most frequently cited demand of recovery was the perceived lack of social support as time went on.Conclusions: Almost all long-term survivors were leading full and meaningful lives. Persistent complications were, on the whole, dismissed as relatively trivial and the overwhelming majority viewed themselves as cured and well.