a Department of Rehabilitation Medicine and Department of Medicine and Health Sciences , Linköping University , Linköping , Sweden.
b Division of Nursing Science Department of Medicine and Health Sciences , Linköping University , Linköping , Sweden.
Disabil Rehabil. 2019 May;41(9):1037-1043. doi: 10.1080/09638288.2017.1419291. Epub 2018 Jan 8.
To investigate patient satisfaction with intrathecal baclofen treatment, complications from the treatment, and the impact of general expectations on treatment outcome in relation to satisfaction.
A multicentre study with cross-sectional design. Data were collected through questionnaires and patient records. Patients were recruited from six outpatient intrathecal baclofen clinics in Sweden. Eighty-three patients who had been treated with intrathecal baclofen for 1-4 years were included. For patients unable to communicate, data were collected through a proxy. The Patient Global Impression of Change was used to measure patients' general satisfaction with change from intrathecal baclofen treatment. The Life Orientation Test - revised, was used to measure general expectations/optimism.
General satisfaction with intrathecal baclofen treatment was high; 51/77 patients reported "much improved" or "very much improved." There was no relationship between the two main outcomes (general satisfaction and general expectations/optimism) (r = 0.12, p = 0.382). The two groups; those who could and those who could not communicate, did differ regarding personal characteristics and should be evaluated as such.
Most patients/proxies reported a high level of satisfaction with intrathecal baclofen treatment. The reported satisfaction with intrathecal baclofen treatment was not dependent on general expectations. Implications for Rehabilitation Patients with intrathecal baclofen treatment report low levels of health and quality of life at the same time as they are highly satisfied with their treatment. Intrathecal baclofen should be equally offered to both optimistic and less optimistic patients. Patients who are able to/not able to communicate, differs in characteristics and should be informed and followed up in different ways in daily clinical practice.
调查鞘内巴氯芬治疗的患者满意度、治疗相关并发症以及一般期望对治疗结局与满意度的关系。
一项采用多中心、交叉设计的研究。通过问卷和病历收集数据。患者从瑞典的六个鞘内巴氯芬门诊诊所招募。纳入 83 例接受鞘内巴氯芬治疗 1-4 年的患者。对于无法交流的患者，通过代理人收集数据。使用患者总体变化印象量表来衡量患者对鞘内巴氯芬治疗的总体满意度。使用生活取向测试修订版来衡量一般期望/乐观程度。
患者对鞘内巴氯芬治疗的总体满意度较高；77 例患者中有 51 例报告“明显改善”或“非常明显改善”。两个主要结局（总体满意度和一般期望/乐观程度）之间没有关系（r=0.12，p=0.382）。有能力和没有能力交流的两组患者在个人特征方面存在差异，应进行相应评估。
大多数患者/代理人报告对鞘内巴氯芬治疗的满意度较高。报告的鞘内巴氯芬治疗满意度与一般期望无关。
接受鞘内巴氯芬治疗的患者报告其健康水平和生活质量较低，同时对其治疗高度满意。应向同样的患者提供鞘内巴氯芬治疗，无论他们是否乐观。能够/不能够交流的患者在特征上存在差异，在日常临床实践中应采用不同的方式进行告知和随访。
