de Almeida John R, Vescan Allan D, Witterick Ian J, Gullane Patrick J, Gentili Fred, Ringash Jolie, Thoma Achilles, Lohfeld Lynne
Department of Otolaryngology-Head and Neck Surgery, University of Toronto, Toronto, Canada.
Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada.
J Neurol Surg B Skull Base. 2015 Mar;76(2):129-144. doi: 10.1055/s-0034-1371520. Epub 2014 Nov 6.
Skull base tumors are associated with quality of life (QOL) changes. A qualitative case-study approach may help better understand patients' experiences. A total of 34 skull base surgery patients were selected into focus groups using a criterion-based maximum variation sampling strategy from a sampling frame of 138 patients. Eight groups were organized based on a factorial design of surgical approach (endoscopic/pen) and tumor location (anterior/central). Data were analyzed using a conceptual framework. Qualitative analysis was performed on focus group transcripts to identify major themes and determine if surgical approach or tumor location had differential effects on QOL. Concepts were quantitatively tallied from written workbooks. The 34 participants (19 men, 15 women; mean age: 48 years, standard deviation: 14 years) had mixed reactions to their diagnosis ranging from relief to fear. Participants reported physical and nonphysical changes in QOL with some variation in physical complaints by tumor location. Several major themes emerged from the analysis. Skull base tumors are associated with fear and frustration, loss of physical senses and self-identity, social isolation, and coping mechanisms. Skull base surgery may impact patients' lives. Qualitative study of patient experiences can provide rich information to better understand this disease.
颅底肿瘤与生活质量(QOL)变化相关。定性案例研究方法可能有助于更好地了解患者的经历。从138名患者的抽样框架中,采用基于标准的最大变异抽样策略,共选取34名颅底手术患者进入焦点小组。根据手术入路(内镜/开放)和肿瘤位置(前部/中部)的析因设计组织了8个小组。使用概念框架对数据进行分析。对焦点小组的记录进行定性分析,以确定主要主题,并确定手术入路或肿瘤位置对生活质量是否有不同影响。从书面工作簿中对概念进行定量统计。34名参与者(19名男性,15名女性;平均年龄:48岁,标准差:14岁)对他们的诊断有不同的反应,从宽慰到恐惧。参与者报告了生活质量方面的身体和非身体变化,身体不适因肿瘤位置而异。分析中出现了几个主要主题。颅底肿瘤与恐惧和沮丧、身体感觉和自我认同的丧失、社会隔离以及应对机制有关。颅底手术可能会影响患者的生活。对患者经历的定性研究可以提供丰富的信息,以更好地了解这种疾病。