O'Doherty Lorna Jane, Hickey Anne, Hardiman Orla
Department of General Practice, The University of Melbourne, Victoria, Australia.
Amyotroph Lateral Scler. 2010 Oct;11(5):461-8. doi: 10.3109/17482960903552488.
There is little in the literature comparing experiences of patients with disabling and uniformly terminal illness (e.g. amyotrophic lateral sclerosis) and illness characterized by episodic disability and prognostic uncertainty (e.g. multiple sclerosis). This study aimed to compare experiences of disability, quality of life (QoL) and psychological well-being in ALS and MS. One hundred patients with ALS and MS were interviewed at baseline and at six months. Variables measured included function, health related QoL, individualized QoL and psychological distress. Despite the divergent illness experiences of ALS and MS patients, groups did not differ on individualized QoL or mental well-being, and distress was in the normal range. Despite marked deterioration in ALS patients' health, there was no change in mental well-being and QoL. Psychological well-being appeared more important in maintaining QoL (individualized QoL and mental aspects of health related QoL) than physical factors. At the individual level, there was evidence of psychological adaptation to deteriorating function, which underlined the role of specific illness related challenges in determining perceived life quality and emotional well-being. In conclusion, the complex interplay between psychosocial and illness specific factors such as certainty with regard to prognosis has considerable implications for well-being and life quality. Recognizing such factors is essential when designing clinical interventions to promote adjustment and self-management among patients with neurological conditions.
文献中很少有对患有致残性和终末期疾病(如肌萎缩侧索硬化症)的患者与以发作性残疾和预后不确定性为特征的疾病(如多发性硬化症)患者的经历进行比较的内容。本研究旨在比较肌萎缩侧索硬化症(ALS)和多发性硬化症(MS)患者在残疾、生活质量(QoL)和心理健康方面的经历。100名ALS和MS患者在基线和六个月时接受了访谈。测量的变量包括功能、健康相关生活质量、个性化生活质量和心理困扰。尽管ALS和MS患者的疾病经历不同,但两组在个性化生活质量或心理健康方面没有差异,且困扰处于正常范围内。尽管ALS患者的健康状况明显恶化,但其心理健康和生活质量并未改变。心理健康在维持生活质量(个性化生活质量和健康相关生活质量的心理方面)方面似乎比身体因素更重要。在个体层面,有证据表明患者心理上适应了功能的恶化,这凸显了特定疾病相关挑战在决定感知生活质量和情绪健康方面的作用。总之,社会心理因素和特定疾病因素(如预后的确定性)之间的复杂相互作用对幸福感和生活质量有相当大的影响。在设计临床干预措施以促进神经系统疾病患者的适应和自我管理时,认识到这些因素至关重要。