Chochinov Harvey Max, Johnston Wendy, McClement Susan E, Hack Thomas F, Dufault Brenden, Enns Murray, Thompson Genevieve, Harlos Mike, Damant Ronald W, Ramsey Clare D, Davison Sara, Zacharias James, Milke Doris, Strang David, Campbell-Enns Heather J, Kredentser Maia S
Department of Psychiatry, College of Medicine, Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada.
Manitoba Palliative Care Research Unit, CancerCare Manitoba, Winnipeg, Canada.
PLoS One. 2016 Jan 25;11(1):e0147607. doi: 10.1371/journal.pone.0147607. eCollection 2016.
The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations.
A prospective, multi-site approach was used.
Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada.
Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly.
In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI).
Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4-11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress.
People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.
本研究旨在确定四类可能从姑息治疗方法中获益的非癌症人群；描述并比较这些不同临床人群中尊严相关困扰的患病率及模式。
采用前瞻性、多中心研究方法。
位于加拿大曼尼托巴省温尼伯市和艾伯塔省埃德蒙顿市的门诊诊所、住院设施或个人护理之家。
晚期肌萎缩侧索硬化症（ALS）、慢性阻塞性肺疾病（COPD）、终末期肾病（ESRD）患者；以及入住机构的神志清醒的体弱老年人。
除了患者体验的身体、心理和精神方面的标准化测量指标外，还采用患者尊严量表（PDI）。
2009年2月至2012年12月期间，共招募了404名参与者（ALS患者101名；COPD患者100名；ESRD患者101名；体弱老年人102名）。根据分组情况，35%至58%的参与者在参与研究的一年内死亡。虽然尊严感中度至重度丧失在四类研究人群中无显著差异（4% - 11%），但报告有问题的PDI项目数量存在显著差异，即ALS患者为6.2（5.2）项、COPD患者为5.6（5.9）项、体弱老年人为3.0（4.4）项、ESRD患者为2.3（3.9）项[p <.0001]。每个研究人群还呈现出独特且不同的身体、心理和生存困扰模式。
ALS、COPD、ESRD患者以及体弱老年人在走向生命终点时面临独特挑战。了解这些困扰的复杂性以及它们在不同群体中的差异，有助于拓宽我们对非癌症人群临终体验的理解，以及如何最好地满足他们的姑息治疗需求。
