Department of Social Work, New York-Presbyterian Hospital, Columbia University Irving Medical Center, New York, NY.
Adult Palliative Care Service, Department of Medicine, Columbia University Medical Center, New York, NY.
Transplant Proc. 2022 Dec;54(10):2680-2687. doi: 10.1016/j.transproceed.2022.07.001. Epub 2022 Jul 11.
There are 2 main aims of lung transplantation for people with end-stage lung disease: (1) to extend life and (2) to improve its quality. Much consideration is given to how to support the longevity and functioning of the allograft, though less robust studies have been done on the quality of the recipients' lives. With an interest in providing compassionate and holistic patient-centered care, it is vital that the treatment providers accurately understand their patients' lived experience. This study aimed to describe the health-related quality of life experiences of lung transplant recipients. An interest was held for where patients may struggle, thus informing where support might be needed to achieve the best possible outcomes.
This single-center study used a validated Lung Transplant Quality of Life questionnaire, which was sent in autumn of 2020 to all of the lung transplant recipients (n = 581) under the care of Columbia University Irving Medical Center (New York, NY).
"Anxiety/Depression" had the highest concentration of struggle responses, followed closely by "Pulmonary Symptoms" and "Neuromuscular Symptoms." "Neuromuscular Problems" and "Sexual Problems" had the highest percentage of struggle responses. As the struggles increased, the overall quality of life rating dropped proportionately. There was no correlation between the overall quality of life and graft dysfunction, age, or time out from transplant date. All of the domains held an average rating of "Satisfactory," except "Treatment Burden," which was rated as "Favorable." Those ratings dropped for the cohort of patients who died during the study period.
With the goal of providing comprehensive care at the forefront of transplant priorities, we found the newly developed questionnaire invaluable in targeting areas for quality improvements, mostly notably respecting recipient mental health.
肺移植治疗终末期肺病患者有两个主要目标：（1）延长生命，（2）提高生活质量。人们非常关注如何支持移植物的寿命和功能，但对受者生活质量的研究却相对较少。由于关注提供富有同情心和全面的以患者为中心的护理，因此治疗提供者准确了解患者的生活体验至关重要。本研究旨在描述肺移植受者的健康相关生活质量体验。我们对患者可能遇到困难的地方感兴趣，从而了解需要在哪里提供支持，以实现尽可能好的结果。
这项单中心研究使用了经过验证的肺移植生活质量问卷，该问卷于 2020 年秋季发送给哥伦比亚大学欧文医学中心（纽约州纽约市）护理的所有 581 名肺移植受者。
“焦虑/抑郁”的挣扎反应最为集中，其次是“肺部症状”和“神经肌肉症状”。“神经肌肉问题”和“性功能问题”的挣扎反应比例最高。随着挣扎的增加，整体生活质量评分相应下降。整体生活质量与移植物功能障碍、年龄或移植日期与当前时间的差距之间没有相关性。除“治疗负担”外，所有领域的平均评分为“满意”，“治疗负担”的评分为“有利”。在研究期间死亡的患者队列中，这些评分下降。
在将提供全面护理作为移植重点的目标放在首位的情况下，我们发现新开发的问卷在确定需要改进质量的领域非常有价值，尤其是尊重受者的心理健康。
