The Jockey Club End-of-Life Community Care Project, The University of Hong Kong, Hong Kong, China.
The Jockey Club End-of-Life Community Care Project, The University of Hong Kong, Hong Kong, China; Department of Social Work & Social Administration, The University of Hong Kong, Hong Kong, China.
Ann Palliat Med. 2024 May;13(3):513-530. doi: 10.21037/apm-23-565. Epub 2024 May 14.
The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups.
This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed.
Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden.
This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies influential factors that can affect the perceived intensity of symptom burden, primarily the main type of terminal illness and patient's age. Tailored care support and improved clinical care should be implemented, particularly for high-risk groups such as patients with non-cancer terminal illnesses and older aged patients. These findings contribute to existing literature and emphasize the need for comprehensive and individualized care in EoLC.
终末期患者所经历的痛苦包括生理、心理社会和精神层面。尽管之前的研究已经调查了特定疾病群体(如癌症或心力衰竭患者)的症状负担强度,但对于不同终末期患者的主要困扰症状仍存在研究空白。本研究评估了不同疾病群体的症状负担强度,并探讨了其影响因素。
本横断面研究使用了终末期护理(EoLC)干预的基线综合姑息治疗结局量表(IPOS)评估数据。研究参与者是在香港接受 EoLC 干预的终末期患者。采用相对重要性指数(RII)、单因素方差分析(ANOVA)和广义线性回归(GLR)等统计方法。
最终样本包括 1549 名终末期患者(平均年龄=77.4 岁,标准差=11.6)。RII 分析显示,这些患者中排名前五的困扰症状分别是行动不便(RII=64.4%)、家庭焦虑(RII=63.5%)、与家人/朋友分享感受(RII=61.4%)、虚弱/缺乏精力(RII=58.1%)和几乎无法感到平静(RII=50.7%)。单因素 ANOVA 显示,在感知的生理和情绪症状负担强度方面,八个疾病组之间存在显著差异(P<0.05)。对每个疾病组的 RII 症状评分进行分析发现,行动不便被运动神经元病、帕金森病、心力衰竭、痴呆、终末期肾病和其他严重疾病(包括中风、血液病、多发性硬化症和肝脏疾病)患者评为最困扰的症状(RII=85.1-62.9%)。癌症患者和慢性阻塞性肺疾病患者最困扰的症状分别是感知到的家庭焦虑(RII=66.1%)和呼吸急促(RII=63.8%)。GLR 分析显示,疾病类型是影响 IPOS 总分和生理症状、情绪症状和沟通/实际问题子量表评分的感知负担强度的最显著因素。人口统计学特征,如年龄、性别、婚姻状况和共同居住状况,也被确定为各种症状类别的影响因素。然而,患者的教育水平和与主要照顾者的关系并不显著影响任何感知到的症状负担。
本研究提供了关于不同疾病群体在生命末期所经历的症状负担的有价值的见解。研究结果强调了行动不便、家庭焦虑和呼吸急促等主要困扰症状。解决这些症状对于改善终末期患者的护理质量至关重要。此外,研究还确定了影响症状负担感知强度的因素,主要是终末期主要疾病类型和患者年龄。应实施有针对性的护理支持和改善临床护理,特别是针对非癌症终末期疾病和老年患者等高危群体。这些发现丰富了现有文献,并强调了在 EoLC 中需要进行全面和个体化的护理。