Mattarozzi Katia, Casini Federica, Baldin Elisa, Baldini Martina, Lugaresi Alessandra, Milani Paola, Pietrolongo Erika, Gajofatto Alberto, Leone Maurizio, Riise Trond, Vignatelli Luca, D'Alessandro Roberto
Department of Experimental, Diagnostic and Specialty Medicine, University of Bologna, Bologna, Italy.
IRCCS Institute of Neurological Sciences of Bologna, Bologna, Italy.
Health Expect. 2016 Apr;19(2):437-47. doi: 10.1111/hex.12367. Epub 2015 Apr 24.
An investigation of the domains Italian patients with multiple sclerosis (MS) named as constituting their quality of life over time.
We assessed, in 68 patients, QoL domains using the Schedule for the Evaluation of Individual QoL: (a) before MS diagnosis disclosure, (b) thirty days after disclosure, and (c) after one and (d) four years' follow-up.
The life domains most frequently named by patients were as follows: Family, Work and Finance, Hobbies, Health, Relationship with Friends and Job Effectiveness. Only Health and Job Effectiveness domains varied with time. The Health domain became a critical dimension when MS diagnosis was revealed. In addition, patients tended to be more satisfied with their health after disclosure compared to pre-diagnosis. Job Effectiveness seemed to be an important aspect until 1 year after diagnosis disclosure, but it tended to become less crucial over time. Family seems to be the most important domain over time, and psychological adaptation to MS seems to be characterized by a reconceptualization of aspects that revolve around oneself, such as professional success, rather than relational or affective factors.
Evaluating the most relevant life domains for patients and their alteration over time may provide practitioners with an important tool in making health-related decisions, thus improving health outcomes and QoL.
调查意大利多发性硬化症(MS)患者随时间推移所认为的构成其生活质量的领域。
我们使用个人生活质量评估量表对68名患者的生活质量领域进行了评估:(a)在MS诊断披露前,(b)披露后30天,以及(c)随访1年和(d)4年后。
患者最常提及的生活领域如下:家庭、工作与财务、爱好、健康、与朋友的关系以及工作效能。只有健康和工作效能领域随时间变化。在MS诊断被披露时,健康领域成为一个关键维度。此外,与诊断前相比,患者在披露后对自身健康往往更满意。工作效能在诊断披露后1年内似乎是一个重要方面,但随着时间推移其重要性趋于降低。随着时间推移,家庭似乎是最重要的领域,而对MS的心理适应似乎以围绕自身的方面(如职业成功)的重新概念化为特征,而非关系或情感因素。
评估对患者最相关的生活领域及其随时间的变化,可能为从业者提供一个在做出与健康相关决策时的重要工具,从而改善健康结果和生活质量。