背景:绝症患者经历的痛苦包括生理,心理社会和精神层面。虽然以前的研究调查了特定疾病组的症状负担强度,比如癌症或心力衰竭患者,在了解不同绝症患者的主要痛苦症状方面存在研究差距.这项研究评估了症状负担强度,并探讨了其在不同患者疾病组中的影响因素。
方法:本横断面研究使用基线综合姑息治疗结果量表(IPOS)评估数据。研究参与者是在香港进行临终关怀(EoLC)干预的绝症患者。统计方法包括相对重要性指数(RII),单向方差分析(ANOVA),采用广义线性回归(GLR)。
结果:最终样本包括1,549名绝症患者(平均年龄=77.4岁,SD=11.6)。这些患者中最常见的五种痛苦症状,RII分析显示,流动性差(RII=64.4%),家庭焦虑(RII=63.5%),与家人/朋友分享感情(RII=61.4%),虚弱/缺乏能量(RII=58.1%),几乎感觉不到和平(RII=50.7%)。单因素方差分析显示,8个疾病组的身体和情绪症状负担强度差异有统计学意义(P<0.05)。对每个疾病组的RII症状评分的分析显示,运动神经元疾病患者将行动不便列为最令人困扰的症状(RII=85.1-62.9%)。帕金森病,心力衰竭,痴呆症,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)。家庭焦虑(RII=66.1%)和呼吸急促(RII=63.8%)是癌症患者和慢性阻塞性肺疾病患者最痛苦的症状,分别。GLR分析表明,就IPOS总分和身体症状的子量表得分而言,疾病类型是影响感知负担强度的最重要因素,情绪症状和沟通/实际问题。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对任何感知的症状负担均无显著影响.
结论:这项研究提供了对不同患者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的主要痛苦症状,家庭焦虑,呼吸急促.解决这些症状对于改善绝症患者的护理质量至关重要。此外,该研究确定了可以影响症状负担感知强度的影响因素,主要是绝症的主要类型和患者的年龄。应实施量身定制的护理支持和改进的临床护理,特别是对于高危人群,如非癌症晚期疾病患者和老年患者。这些发现有助于现有文献,并强调在EoLC中需要全面和个性化的护理。
BACKGROUND: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.