University of Melbourne, Parkville, and St Vincent's Hospital, Fitzroy, Victoria, Australia.
St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia.
Arthritis Care Res (Hoboken). 2024 Jul;76(7):964-972. doi: 10.1002/acr.25325. Epub 2024 May 15.
The importance of early integration of palliative care in the management of complex multisystem diseases has been recognized. In this study, we aimed to quantify the need for specialist palliative care in patients with systemic sclerosis (SSc).
Using data from 875 patients enrolled in the Australian Scleroderma Cohort Study, we defined the need for palliative care as a high symptom burden at two or more consecutive study visits, at ≥50% of overall study visits, or at the study visit immediately before death. Symptoms of interest included breathlessness, fatigue, pain, depression, anxiety, constipation, and diarrhea. Logistic regression analyses evaluated the association between individual symptoms and SSc manifestations. Linear regression analysis evaluated the relationship between palliative care needs and quality of life (QoL) and function.
Almost three-quarters of patients (72.69%) met the threshold for specialist palliative care needs. Severe fatigue (54.17%) was most common, followed by breathlessness (23.66%) and severe constipation (21.14%). Concurrent severe symptoms were frequently observed. Severe breathlessness (coefficient [coef] -7.95, P < 0.01) and pain (coef -7.70, P < 0.01) were associated with the largest reductions in physical QoL. Severe mood symptoms were associated with the greatest reduction in mental QoL (coef -12.91, P < 0.01). Severe pain (coef 0.56, P < 0.01), breathlessness (coef 0.49, P < 0.01), and mood symptoms (coef 0.40, P < 0.01) had a significant impact on function.
SSc is frequently associated with multiple severe symptoms that may be amenable to palliative care intervention. Given the strong association between symptom burden and impaired QoL targeted, effective symptom management in parallel with standard-of-care treatments may improve overall patient outcomes.
人们已经认识到在复杂多系统疾病的管理中尽早纳入姑息治疗的重要性。本研究旨在量化系统性硬化症（SSc）患者对专科姑息治疗的需求。
我们使用了来自澳大利亚硬皮病队列研究的 875 名患者的数据，将姑息治疗需求定义为在两次或多次连续研究访视时、在≥50%的总研究访视时或在死亡前的研究访视时存在高症状负担。感兴趣的症状包括呼吸困难、疲劳、疼痛、抑郁、焦虑、便秘和腹泻。逻辑回归分析评估了个体症状与 SSc 表现之间的关联。线性回归分析评估了姑息治疗需求与生活质量（QoL）和功能之间的关系。
近四分之三的患者（72.69%）符合专科姑息治疗需求的标准。最常见的是严重疲劳（54.17%），其次是呼吸困难（23.66%）和严重便秘（21.14%）。同时存在严重症状的情况很常见。严重呼吸困难（系数-7.95，P<0.01）和疼痛（系数-7.70，P<0.01）与身体 QoL 的最大降低相关。严重情绪症状与心理 QoL 的最大降低相关（系数-12.91，P<0.01）。严重疼痛（系数 0.56，P<0.01）、呼吸困难（系数 0.49，P<0.01）和情绪症状（系数 0.40，P<0.01）对功能有显著影响。
SSc 常伴有多种可能需要姑息治疗干预的严重症状。鉴于症状负担与 QoL 受损之间存在很强的关联，针对特定症状进行有效的症状管理，同时进行标准治疗，可能会改善整体患者结局。
