PDF(Pubmed)
Abstract：
BACKGROUND: Palliative care focuses on improving patient and family quality of life by managing symptoms, psychosocial issues and spiritual concerns. Huntington\'s disease is a progressive neurodegenerative disorder with no current disease modifying therapy. Although the palliative care model has been postulated to be an integral part of HD care, there are gaps in knowledge about how this care should be implemented. This study aims to identify perceptions of palliative care in Huntington\'s Disease (HD), palliative care needs of people living with HD, and at what point they feel they would benefit from these resources.
METHODS: Participants volunteered from a large academic institution patient base to be involved in semi structured interviews that explored patient and caregiver experience surrounding their diagnosis, disease management, quality of life, and areas for improvement. Inclusion criteria for participants was a diagnosis of Huntington\'s disease and/or a self-identified caregiver of a person living with the disease.
RESULTS: A total of 12 independent patients, three independent caregivers, and five dyads completed the interviews. Themes identified included needs that would provide patient and caregiver centered treatment, current gaps in care, an openness and desire for palliative care, and knowledge about the desired timing of palliative care in treatment plans.
CONCLUSIONS: People living with HD and caregivers of people with HD most desire access to treatment that would focus on symptom management, availability of social resources, advanced care planning and spiritual wellbeing. The preferred timing of this intervention for most individuals would be at the onset of symptoms.
METHODS: Participants volunteered from a large academic institution patient base to be involved in semi structured interviews that explored patient and caregiver experience surrounding their diagnosis, disease management, quality of life, and areas for improvement. Inclusion criteria for participants was a diagnosis of Huntington\'s disease and/or a self-identified caregiver of a person living with the disease.
RESULTS: A total of 12 independent patients, three independent caregivers, and five dyads completed the interviews. Themes identified included needs that would provide patient and caregiver centered treatment, current gaps in care, an openness and desire for palliative care, and knowledge about the desired timing of palliative care in treatment plans.
CONCLUSIONS: People living with HD and caregivers of people with HD most desire access to treatment that would focus on symptom management, availability of social resources, advanced care planning and spiritual wellbeing. The preferred timing of this intervention for most individuals would be at the onset of symptoms.
摘要：
背景：姑息治疗侧重于通过控制症状来改善患者和家庭的生活质量，心理社会问题和精神问题。亨廷顿病是一种进行性神经退行性疾病，目前尚无疾病修饰疗法。尽管姑息治疗模式被认为是HD护理不可或缺的一部分，关于如何实施这种护理的知识存在差距。这项研究旨在确定亨廷顿病(HD)对姑息治疗的看法，患有HD的人的姑息治疗需求，以及在什么时候他们觉得他们会从这些资源中受益。
方法：参与者自愿从大型学术机构患者基地参与半结构化访谈，探索患者和护理人员围绕其诊断的经验，疾病管理,生活质量,和需要改进的地方。参与者的纳入标准是亨廷顿病的诊断和/或患有该疾病的人的自我鉴定的照顾者。
结果：共有12名独立患者，三个独立的照顾者，五个二元组完成了面试。确定的主题包括提供以患者和护理人员为中心的治疗的需求，目前在护理方面的差距，对姑息治疗的开放和渴望，以及有关治疗计划中姑息治疗所需时机的知识。
结论：HD患者和HD患者的护理人员最希望获得以症状管理为重点的治疗，社会资源的可用性，先进的护理计划和精神健康。对于大多数个体来说，这种干预的首选时机是在症状发作时。
方法：参与者自愿从大型学术机构患者基地参与半结构化访谈，探索患者和护理人员围绕其诊断的经验，疾病管理,生活质量,和需要改进的地方。参与者的纳入标准是亨廷顿病的诊断和/或患有该疾病的人的自我鉴定的照顾者。
结果：共有12名独立患者，三个独立的照顾者，五个二元组完成了面试。确定的主题包括提供以患者和护理人员为中心的治疗的需求，目前在护理方面的差距，对姑息治疗的开放和渴望，以及有关治疗计划中姑息治疗所需时机的知识。
结论：HD患者和HD患者的护理人员最希望获得以症状管理为重点的治疗，社会资源的可用性，先进的护理计划和精神健康。对于大多数个体来说，这种干预的首选时机是在症状发作时。
