Department of Nursing and Midwifery, Faculty of Medicine, 48300University of Ostrava, Czech Republic.
Neurology Clinic, The University Hospital Ostrava, Czech Republic.
Am J Hosp Palliat Care. 2021 Nov;38(11):1348-1355. doi: 10.1177/1049909120985422. Epub 2020 Dec 30.
Patients with MS should be provided palliative care, which could help them manage symptoms more efficiently and could solve some psychosocial problems. Evaluating the satisfaction with provided care may be one of the factors of the quality of care evaluation.
The aim of this controlled intervention study was to determine the factors affecting one's satisfaction with care in patients in advanced stages of MS and their caregivers. Furthermore, the aim was to study the difference in the satisfaction of patients and family members with the provided specialized palliative care, as opposed to the standard care.
The sample consisted of 103 patients with MS who were randomized to either a palliative care intervention or the control group. Family members of each patient were invited in the study, and 97 caregivers agreed to participe. The patients in the intervention group were provided with neuropalliative care in the form of consultations with a multidisciplinary palliative team. A modified questionnaire, CANHELP Lite, was used to collect data. Patients and family members completed the questionnaire 3 months after the intervention.
The patients and caregivers in the intervention group expressed significantly greater satisfaction in all analyzed areas (p = 0.000-0.002). The provided intervention predicted the satisfaction in the domains of a relationship with the doctor, disease management, and decision-making/communication. Another important predictor of the satisfaction in all domains was the functional state of the patient.
Targeted consultations resulted in the greater satisfaction of patients with MS and their caregivers with the provided care.
多发性硬化症患者应提供姑息治疗，这有助于他们更有效地控制症状，并解决一些心理社会问题。评估对所提供护理的满意度可能是护理质量评估的因素之一。
本对照干预研究的目的是确定影响晚期多发性硬化症患者及其护理人员对护理满意度的因素。此外，还旨在研究患者和家庭成员对专门姑息治疗的满意度与标准护理的差异。
该样本由 103 名多发性硬化症患者组成，他们被随机分配到姑息治疗干预组或对照组。每位患者的家属都被邀请参加研究，其中 97 名护理人员同意参加。干预组的患者接受了多学科姑息治疗小组的神经姑息治疗咨询。使用改良的 CANHELP Lite 问卷收集数据。患者和家属在干预 3 个月后完成问卷。
干预组的患者和护理人员在所有分析领域的满意度均显著提高（p=0.000-0.002）。提供的干预措施预测了与医生的关系、疾病管理和决策/沟通领域的满意度。患者的功能状态也是所有领域满意度的重要预测因素。
有针对性的咨询使多发性硬化症患者及其护理人员对所提供的护理更加满意。
