Tsoy Natalya, Langewitz Wolf, Müri Selina, Notter Seraina, Pannek Jürgen, Post Marcel W M, Rednic Lacrimioara-Nicoleta, Rubinelli Sara, Scheel-Sailer Anke
Swiss Paraplegic Centre, Nottwil, Switzerland.
Basel University Hospital, Psychosomatic Medicine - Communication in Medicine, Basel, Switzerland.
J Spinal Cord Med. 2025 Jan;48(1):129-140. doi: 10.1080/10790268.2023.2263235. Epub 2023 Oct 11.
At present, there is a lack of information concerning patients' perspectives on their quality of life (QoL) after a recently acquired spinal cord injury/disorder (SCI/D).
To explore patients' perspectives on their QoL during their first inpatient rehabilitation after the onset of SCI/D.
Qualitative study. Semi-structured face-to-face interviews were conducted with 20 participants aged 18 years or older at least three months after the onset of SCI/D and two weeks before they were discharged from their first rehabilitation. Audio-recorded interviews were transcribed and analyzed according to the thematic content analysis. Interviewees rated their QoL with the SCI QoL data set.
The interviewees judged their satisfaction with life as a whole, their physical and mental health, as relatively high with values between six and eight (with 10 meaning complete satisfaction). They highlighted social aspects, health topics, and the experience of autonomy as relevant to their concept of QoL. The aspects that positively influenced QoL included the level of well-being in the current social and institutional environment, the increased level of energy, strength, and autonomy in daily life, and an improved mental state derived from general positive personal attitudes. In contrast, the social restrictions during the COVID-19 pandemic, physical issues including pain, a lack of progress associated with psychological dissatisfaction, and limitations in personal independence decreased patients' QoL.
Since the interviewees described different aspects from the areas of social, health and autonomy as important for their QoL, exploring and addressing these areas should be used to achieve an individualized first rehabilitation.
目前,关于患者对近期脊髓损伤/疾病(SCI/D)后生活质量(QoL)的看法,相关信息较为匮乏。
探讨患者对SCI/D发病后首次住院康复期间生活质量的看法。
定性研究。对20名18岁及以上的参与者进行了半结构化面对面访谈,访谈在SCI/D发病至少三个月后且首次康复出院前两周进行。对录音访谈进行转录,并根据主题内容分析进行分析。受访者使用脊髓损伤生活质量数据集对其生活质量进行评分。
受访者对整体生活、身心健康的满意度相对较高,评分为6至8分(满分10分表示完全满意)。他们强调社会方面、健康话题以及自主体验与他们的生活质量概念相关。对生活质量有积极影响的方面包括当前社会和机构环境中的幸福感水平、日常生活中精力、力量和自主性的提高,以及源自积极个人态度的心理状态改善。相比之下,新冠疫情期间的社会限制、包括疼痛在内的身体问题、与心理不满相关的缺乏进展以及个人独立性的限制降低了患者的生活质量。
由于受访者将社会、健康和自主领域的不同方面描述为对其生活质量很重要,因此应通过探索和解决这些领域的问题来实现个性化的首次康复。