探索晚期癌症患者的“好日子”:一项实验性的每日日记研究。

IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Palliative Medicine Pub Date : 2025-01-06 DOI:10.1177/02692163241310683
David Lazris, Jennifer Fedor, Svea Cheng, Christianna Bartel, Krina C Durica, Leeann Chen, Carissa A Low
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引用次数: 0

摘要

背景:IV期癌症患者面临着影响生活质量的身体和情感挑战。传统的生活质量测量不能反映病人健康状况的日常波动。目的:这项初步研究使用每日日记来探索晚期癌症患者“美好日子”的概念,并确定与“美好日子”相关的活动,以及日常“美好”与常规生活质量指标之间的联系。设计:20名患有IV期癌症的参与者在14天的时间里在一个移动应用程序上完成了每天的日记。参与者对每天的“好”进行评分,并记录下每天的活动。统计分析检查了来自患者报告结果测量信息系统(PROMIS)的日常“良好”评分、活动和基线生活质量测量之间的关联。环境/参与者:参与者从肿瘤学诊所和在线研究登记处招募。入选标准包括年龄在18岁以上,患有第四期癌症,拥有智能手机。结果:对来自18名参与者的178份已完成调查的分析显示,总体平均“善良”评级在人与人之间的差异比人与人之间的差异更大。平均善良与社会角色/活动参与能力的PROMIS域正相关,与焦虑和抑郁的PROMIS域负相关。参与者报告说,当他们从事休闲活动时,日子过得更好,而当他们花时间处理身体症状时,日子过得更糟。结论:这项研究强调了了解晚期癌症患者日常生活质量的重要性。需要进一步的研究来纵向评估生活质量,并在这一人群中开发个性化的支持和姑息治疗干预措施。
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Exploring "good days" with advanced cancer: A pilot daily diary study.

Background: People with Stage IV cancer face physical and emotional challenges impacting quality of life. Conventional quality of life measures do not capture daily fluctuations in patient well-being.

Aim: This pilot study used daily diaries to explore the concept of a "good day" living with advanced cancer and to identify activities associated with "good days" as well as associations between daily "goodness" and conventional quality of life measures.

Design: Twenty participants with Stage IV cancer completed daily diaries on a mobile app over a 14-day period. Participants rated each day's "goodness" and documented daily activities. Statistical analyses examined associations between daily "goodness" ratings, activities, and baseline quality of life measures from the Patient-Reported Outcomes Measurement Information System (PROMIS).

Setting/participants: Participants were recruited from oncology clinics and online research registries. Inclusion criteria included age over 18 years old, having Stage IV cancer, and owning a smartphone.

Results: Analysis of 178 completed surveys from 18 participants revealed overall average "goodness" ratings exhibited more within-person than between-person variability. Average goodness was positively related to the PROMIS domain of Ability to Participate in Social Roles/Activities and negatively related to PROMIS domains of Anxiety and Depression. Participants reported better days when they engaged in leisure activities and worse days when they spent time managing physical symptoms.

Conclusions: This study highlights the importance of understanding day-to-day quality of life in individuals with advanced cancer. Further research is needed to assess quality of life longitudinally and to develop personalized supportive and palliative care interventions in this population.

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来源期刊
Palliative Medicine
Palliative Medicine 医学-公共卫生、环境卫生与职业卫生
CiteScore
7.60
自引率
9.10%
发文量
125
审稿时长
6-12 weeks
期刊介绍: Palliative Medicine is a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. This outstanding journal features editorials, original papers, review articles, case reports, correspondence and book reviews. Essential reading for all members of the palliative care team. This journal is a member of the Committee on Publication Ethics (COPE).
期刊最新文献
Delirium prevention in hospices: Opportunities and limitations - A focused ethnography. Exploring "good days" with advanced cancer: A pilot daily diary study. Re: Tan et al., Subcutaneous sodium valproate in palliative care: A systematic review. A pragmatic approach to selecting a grading system for clinical practice recommendations in palliative care. Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.
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