Abstract：
BACKGROUND: In 2017, the European Association for Neuro-Oncology (EANO) published the guideline for palliative care (PC) in adults with glioma. The Italian Society of Neurology (SIN), the Italian Association for Neuro-Oncology (AINO), and the Italian Society for Palliative Care (SICP) joined forces to update and adapt this guideline to the Italian context and aimed to involve patients and carers in the formulation of the clinical questions.
METHODS: During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis).
RESULTS: We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient\'s behavior and personality changes and appreciated the preservation of patient\'s functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient\'s involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role.
CONCLUSIONS: Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.
METHODS: During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis).
RESULTS: We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient\'s behavior and personality changes and appreciated the preservation of patient\'s functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient\'s involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role.
CONCLUSIONS: Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.
摘要：
背景：2017年，欧洲神经肿瘤学协会（EANO）发布了成人胶质瘤姑息治疗（PC）指南。意大利神经病学会（SIN），意大利神经肿瘤协会（AINO），和意大利姑息治疗协会(SICP)联手更新和调整本指南以适应意大利的情况,旨在让患者和护理人员参与临床问题的制定.
方法：在对神经胶质瘤患者的半结构化访谈和与已故患者的家庭照顾者的焦点小组会议（FGM）期间，参与者对一组预先指定的干预主题的重要性进行了评分，分享他们的经验,并提出了其他主题。采访和FGM是录音的，转录，编码,并进行了分析(框架和内容分析)。
结果：我们进行了20次访谈和5次FGM（28名护理人员）。双方都认为预先指定的主题很重要，主要是信息/通信，心理支持,症状管理，和康复。患者发表了局灶性神经和认知缺陷的影响。照顾者报告了在处理患者的行为和人格变化方面的困难，并赞赏通过康复保护患者的功能。两者都肯定了专门的医疗保健路径和患者参与决策过程的重要性。照顾者表示需要接受教育和支持他们的照顾角色。
结论：访谈和FGM提供了很好的信息和情感挑战。双方确认了预先指定的议题的重要性,和照顾者提出了一个额外的主题：教育/支持照顾者。我们的发现加强了全面护理方法以及满足患者及其家庭护理人员需求的重要性。
方法：在对神经胶质瘤患者的半结构化访谈和与已故患者的家庭照顾者的焦点小组会议（FGM）期间，
结果：我们进行了20次访谈和5次FGM（28名护理人员）。
结论：访谈和FGM提供了很好的信息和情感挑战。
