Ozanne Anneli, Graneheim Ulla H, Ekstedt Gerd, Malmgren Kristina
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Department of Nursing, Umeå University, Umeå, Sweden.
Epilepsia. 2016 Apr;57(4):605-11. doi: 10.1111/epi.13333. Epub 2016 Feb 11.
The aim of this prospective and population-based longitudinal study was to explore patients' expectations before surgery and their experiences both short and long term after epilepsy surgery.
A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis.
Eighty patients participated in the study. Before surgery, patients experienced a belief in a "normal" life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement.
Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.
这项前瞻性基于人群的纵向研究旨在探讨癫痫手术前患者的期望以及术后短期和长期的经历。
一个全国性的成年患者样本在术前、术后2年以及横断面长期随访（平均13年，标准差[SD]1.85）时回答了开放式问题。答案采用定性内容分析法进行分析。
80名患者参与了该研究。手术前，患者对“正常”生活抱有信念；他们希望减少癫痫发作和药物使用，拥有更丰富的社交生活以及更多自信。然而，他们也对未知感到焦虑。他们害怕手术、持续癫痫发作以及并发症。在术后的两次随访中，患者的独立性都有所增强。他们的症状减轻，担忧和恐惧得到缓解，并感觉自己迎来了新生活。然而，一些患者经历了手术使他们的生活变差，这是由于心理和神经方面的不良反应，无论他们是否实现了癫痫发作自由或病情改善。
癫痫手术的积极经历在短期和长期都占主导。然而，必须关注手术前的负面期望和手术后的负面经历，以便提供个性化支持和信息。这应该会增加患者在手术前抱有现实希望并在术后新生活状况中找到应对策略的可能性。
