Douglas Sara L, Lipson Amy R, Daly Barbara J
Arline H. & Curtis F. Garvin Professor, FPB School of Nursing, Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH 44106, USA.
Senior Research Associate, FPB School of Nursing, Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH 44106, USA.
POJ Nurs Pract Res. 2018;2(1). doi: 10.32648/2577-9516/2/1/003. Epub 2018 Apr 18.
The study objective was to determine concordance between patients and family caregivers' preferences for quality or length of life over time.
Patients with advanced cancer are confronted with difficult decisions throughout their course of treatment and at end of life (EOL). These decisions can be influenced by their family caregivers' preferences for the patient's cancer treatment.
Using a longitudinal, descriptive study design from an on-going study, data were collected on an adult sample of patients with advanced stage GI or lung cancers and their family caregivers (n=237). Using a one item visual analog scale (0-100 with higher number indicating a preference for length of life over quality of life), patients and family caregivers were asked "regarding your/your loved one's care, what is most important to you right now?" Data were collected every 3 months until 15 months or patient's death.
At enrollment, the preference scores between patients (48.5) and family caregivers (42.6) were closely aligned. At the last assessment prior to death, these scores diverged with the caregivers favoring goals associated with quality of life over length of life (p=.02).
Patients and family caregivers have differing preferences and these goals of care can change over time. Attention to these differences could be used to guide conversations between patients and family caregivers regarding preferences at EOL.
本研究的目的是确定患者与家庭照顾者在一段时间内对生活质量或生命长度的偏好之间的一致性。
晚期癌症患者在整个治疗过程及生命末期（EOL）都面临艰难的决策。这些决策可能会受到其家庭照顾者对患者癌症治疗偏好的影响。
采用一项正在进行的研究中的纵向描述性研究设计，收集了晚期胃肠道或肺癌成年患者及其家庭照顾者（n = 237）的样本数据。使用单项视觉模拟量表（0 - 100，数字越高表明更倾向于生命长度而非生活质量），询问患者和家庭照顾者“关于你/你所爱的人的护理，目前对你来说最重要的是什么？”每3个月收集一次数据，直至15个月或患者死亡。
入组时，患者（48.5）和家庭照顾者（42.6）的偏好得分紧密一致。在死亡前的最后一次评估中，这些得分出现分歧，照顾者更倾向于与生活质量相关而非生命长度的目标（p = 0.02）。
患者和家庭照顾者有不同的偏好，且这些护理目标会随时间变化。关注这些差异可用于指导患者与家庭照顾者之间关于生命末期偏好的对话。
