PDF(Pubmed)
Abstract：
UNASSIGNED: Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs.
UNASSIGNED: We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted.
UNASSIGNED: Four themes relating to the impact experiences of people with LGG were generated: \"Emotional response to the diagnosis,\" \"Living with the \'What ifs\',\" \"Changing relationships,\" and \"Faltering independence.\" These reflect participants\' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout.
UNASSIGNED: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.
UNASSIGNED: We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted.
UNASSIGNED: Four themes relating to the impact experiences of people with LGG were generated: \"Emotional response to the diagnosis,\" \"Living with the \'What ifs\',\" \"Changing relationships,\" and \"Faltering independence.\" These reflect participants\' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout.
UNASSIGNED: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.
摘要：
■定量研究表明，患有低度神经胶质瘤（LGG）的人通常报告与健康相关的生活质量较低。然而,目前尚不清楚这种影响是如何经历的;由此产生的支持性护理需求也知之甚少.我们探索了人们如何体验与LGG长期生活的影响，帮助识别潜在的支持性护理需求。
■我们对英国各地LGG（n=28）的不同人群进行了半结构化访谈，完成初级治疗的人(男性n=16，女性n=12，平均年龄54.6岁，自诊断以来的平均时间8.7年)。对访谈进行了转录，并进行了归纳主题分析。
■产生了与LGG患者的影响体验有关的四个主题：“对诊断的情感反应，\"\"与\"如果\"生活在一起，\"\"改变关系,\"和\"不独立。“这些反映了参与者的症状经历(例如，疲劳,癫痫发作)和损伤(例如，运动功能障碍,认知缺陷)，以及这些，反过来,开车对日常生活的影响(包括对工作的影响，关系,社会活动,和运输）。与会者以深刻的情感讲述了他们的经历。
■LGG患者可以经历广泛的日常影响，并且可能有广泛的支持性护理需求。这项研究强调了这种影响是如何经历的，以及它对LGG患者意味着什么。为LGG客户量身定制的全面需求评估的最佳实践建议，并制定个性化计划来满足这些需求，这将是确保LGG患者在生活条件下得到最好支持的关键一步。
■我们对英国各地LGG（n=28）的不同人群进行了半结构化访谈，完成初级治疗的人(男性n=16，女性n=12，平均年龄54.6岁，自诊断以来的平均时间8.7年)。对访谈进行了转录，并进行了归纳主题分析。
■产生了与LGG患者的影响体验有关的四个主题：“对诊断的情感反应，\"\"与\"如果\"生活在一起，\"\"改变关系,\"和\"不独立。“这些反映了参与者的症状经历(例如，疲劳,癫痫发作)和损伤(例如，运动功能障碍,认知缺陷)，以及这些，反过来,开车对日常生活的影响(包括对工作的影响，关系,社会活动,和运输）。与会者以深刻的情感讲述了他们的经历。
■LGG患者可以经历广泛的日常影响，并且可能有广泛的支持性护理需求。这项研究强调了这种影响是如何经历的，以及它对LGG患者意味着什么。为LGG客户量身定制的全面需求评估的最佳实践建议，并制定个性化计划来满足这些需求，这将是确保LGG患者在生活条件下得到最好支持的关键一步。
