WA Centre for Cancer and Palliative Care/Curtin Health Innovation Research Institute, Curtin University of Technology, Bentley, Western Australia, Australia.
Patient Educ Couns. 2010 Apr;79(1):112-9. doi: 10.1016/j.pec.2009.08.013. Epub 2009 Sep 16.
To understand patients' experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory.
Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method.
Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits.
Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression.
This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients' information and support needs and be aware that these change over and within time.
了解高级别胶质瘤患者的体验，并确定和描述疾病轨迹中的信息和支持需求。
对 19 名患者进行了半结构化访谈。使用扎根理论和恒定性比较方法对数据进行了分析。
确定了四个主要主题：（1）对预后和生活质量的不确定性的感受；（2）对个性化信息的需求；（3）由于认知缺陷、失去平衡和无法驾驶而依赖照顾者；（4）与卫生专业人员就预后不确定性和疾病进展进行沟通，由于复杂的语言缺陷而存在沟通障碍。
之前的 HGG 研究早于目前的联合治疗标准，或者检查了混合人群。本研究发现，HGG 患者的需求与其他终末期恶性肿瘤患者不同，并且这些需求会随着疾病的进展而变化。
本研究表明，脑肿瘤患者可能有独特的需求。卫生专业人员需要明确患者的信息和支持需求，并意识到这些需求会随着时间的推移而变化。
