Aranđelović Branimirka, Simić Svetlana, Simin Dragana, Mikić Milena, Dolinaj Vladimir, Bogdanović Vasić Slobodanka, Milutinović Dragana
Department of Nursing, Faculty of Medicine, University of Novi Sad, 21000 Novi Sad, Serbia.
Department of Neurology, Faculty of Medicine, University of Novi Sad, 21102 Novi Sad, Serbia.
Healthcare (Basel). 2024 Oct 11;12(20):2024. doi: 10.3390/healthcare12202024.
BACKGROUND/OBJECTIVES: Multiple sclerosis is characterised by the manifestation of heterogeneous symptoms that affect daily functioning. Patients face physical impairment, psychological problems and socioeconomic changes. Depending on the form of the disease, they may have different needs, which are often unsatisfied and could be overcome by including palliative care in the treatment. Despite the above, not enough is known about this population's needs for palliative care. This cross-sectional study aimed to identify the need for palliative care and assess the functional dependence level in daily living activities in patients with multiple sclerosis.
The sample consisted of 120 patients from the Neurology Clinic of the University Clinical Center of Vojvodina, Serbia. The following research instruments were used: a General questionnaire, Sheffield Profile for Assessment and Referral for Care, Multiple Sclerosis Impact Scale and Barthel Index.
The need for palliative care was expressed by 36.7% of patients, who expressed the most concern for the physical symptoms, independence and activity domains. Also, it was determined that the disease prevents patients from doing demanding physical tasks and that they are worried about multiple sclerosis. Almost a quarter of patients have had complete/severe dependence on other persons in performing daily activities.
The most frequently reported physical symptoms by patients with MS were weakness, bladder problems, fatigue and different levels of dependence, while concerns related to sexual health, low mood and anxiety emerged as key challenges in the psychological domain. These findings underscore the importance of conducting needs assessments to guide the development of an appropriate palliative care model for MS patients.
背景/目的：多发性硬化症的特征是出现影响日常功能的多种不同症状。患者面临身体损伤、心理问题和社会经济变化。根据疾病的形式，他们可能有不同的需求，这些需求往往得不到满足，而将姑息治疗纳入治疗中可能会克服这些需求。尽管如此，对于这一人群对姑息治疗的需求了解不足。这项横断面研究旨在确定多发性硬化症患者对姑息治疗的需求，并评估其日常生活活动中的功能依赖程度。
样本包括来自塞尔维亚伏伊伏丁那大学临床中心神经科诊所的120名患者。使用了以下研究工具：一份通用问卷、谢菲尔德护理评估与转诊量表、多发性硬化症影响量表和巴氏指数。
36.7%的患者表示需要姑息治疗，他们最关心身体症状、独立性和活动领域。此外，已确定该疾病使患者无法完成要求较高的体力任务，并且他们担心多发性硬化症。近四分之一的患者在进行日常活动时完全/严重依赖他人。
多发性硬化症患者最常报告的身体症状是虚弱、膀胱问题、疲劳和不同程度的依赖，而与性健康、情绪低落和焦虑相关的问题是心理领域的关键挑战。这些发现强调了进行需求评估以指导为多发性硬化症患者开发适当的姑息治疗模式的重要性。
