Department of Medicine for Older People, Amsterdam Public Health Research Institute (APH), Amsterdam UMC, Vrije Universiteit Amsterdam, PO Box 7057, 1007 MB, Amsterdam, The Netherlands.
School of Health Studies, HAN University of Applied Sciences, Nijmegen, The Netherlands.
BMC Palliat Care. 2021 Jan 12;20(1):12. doi: 10.1186/s12904-020-00706-x.
Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis.
To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease.
A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified.
Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible.
Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.
亨廷顿病（HD）预后不良。随着疾病的进展，决策能力和沟通能力可能会丧失。因此，鼓励 HD 患者进行预先护理计划（ACP）。为了改善 HD 患者的 ACP，需要更好地了解这些患者如何面对其不良预后。
深入了解接受门诊护理的 HD 患者对未来的看法，以及他们处理疾病不良预后的方式。
使用半结构化访谈对 12 名 HD 患者（7 名门诊患者、3 名日间护理患者、2 名辅助生活设施患者）进行定性研究。对录音采访进行逐字转录。通过阅读和反复阅读采访、在研究团队中写备忘录和讨论，确定了策略。
出现了三种面对 HD 未来的策略。参与者看到了未来：1）是一个你必须为其做准备的时期；2）是一个你宁愿不去想的时期；3）是一个你不必担心的时期。参与者可以同时采用多种策略。尽管参与者意识到他们会恶化，并且将来需要更多的护理，但他们试图将这种知识“保持在一定距离”，动机是尽可能使日常生活保持可控。
官方 ACP 指南建议讨论未来治疗和护理的目标和偏好，但患者往往希望活在当下。需要进一步研究以阐明处理这种差异的最佳方法。
