Palliative and Advanced Illness Research Center, University of Pennsylvania, Philadelphia.
Division of Pulmonary, Allergy, and Critical Care, Department of Medicine, University of Pennsylvania, Philadelphia.
JAMA Netw Open. 2023 Nov 1;6(11):e2344030. doi: 10.1001/jamanetworkopen.2023.44030.
Patients' expectations for future health guide their decisions and enable them to prepare, adapt, and cope. However, little is known about how inaccurate expectations may affect patients' illness outcomes.
To assess the association between patients' expectation inaccuracies and health-related quality of life.
DESIGN, SETTING, AND PARTICIPANTS: This cohort study of patients with severe chronic obstructive pulmonary disease (COPD) was conducted from 2017 to 2021, which included a 24-month follow-up period. Eligible participants received outpatient primary care at pulmonary clinics of a single large US health system. Data were analyzed between 2021 and 2023.
Expectation accuracy, measured by comparing patients' self-reported expectations of their symptom burden with their actual physical and emotional symptoms 3, 12, and 24 months in the future.
Health-related quality of life, measured by the St George's Respiratory Questionnaire-COPD at 3, 12, and 24 months.
A total of 207 participants were included (median age, 65.5 years [range, 42.0-86.0 years]; 120 women [58.0%]; 118 Black [57.0%], 79 White [38.2%]). The consent rate among approached patients was 80.0%. Most patients reported no or only limited discussions of future health and symptom burdens with their clinicians. Across physical and emotional symptoms and all 3 time points, patients' expectations were more optimistic than their experiences. There were no consistent patterns of measured demographic or behavioral characteristics associated with expectation accuracy. Regression models revealed that overoptimistic expectations of future burdens of dyspnea (linear regression estimate, 4.68; 95% CI, 2.68 to 6.68) and negative emotions (linear regression estimate, -3.04; 95% CI, -4.78 to 1.29) were associated with lower health-related quality of life at 3 months after adjustment for baseline health-related quality of life, forced expiratory volume over 1 second, and interval clinical events (P < .001 for both). Similar patterns were observed at 12 months (dyspnea: linear regression estimate, 2.41; 95% CI, 0.45 to 4.37) and 24 months (negative emotions: linear regression estimate, -2.39; 95% CI, -4.67 to 0.12; dyspnea: linear regression estimate, 3.21; 95% CI, 0.82 to 5.60), although there was no statistically significant association between expectation of negative emotions and quality of life at 12 months.
In this cohort study of patients with COPD, we found that patients are overoptimistic in their expectations about future negative symptom burdens, and such inaccuracies were independently associated with worse well-being over time. Developing and implementing strategies to improve patients' symptom expectations may improve patient-centered outcomes.
患者对未来健康的预期指导着他们的决策，使他们能够做好准备、适应和应对。然而，对于不准确的预期如何影响患者的疾病结局，人们知之甚少。
评估患者预期误差与健康相关生活质量之间的关联。
设计、地点和参与者：这项对严重慢性阻塞性肺疾病（COPD）患者的队列研究于 2017 年至 2021 年进行，包括 24 个月的随访期。合格的参与者在一家美国大型医疗系统的肺科诊所接受门诊初级保健。数据分析于 2021 年至 2023 年进行。
预期准确性通过比较患者自我报告的症状负担与他们未来 3、12 和 24 个月的实际身体和情绪症状来衡量。
3、12 和 24 个月时使用圣乔治呼吸问卷-COPD 衡量健康相关生活质量。
共纳入 207 名参与者（中位数年龄 65.5 岁[范围 42.0-86.0 岁]；120 名女性[58.0%]；118 名黑人[57.0%]，79 名白人[38.2%]）。获得同意的患者比例为 80.0%。大多数患者报告称，他们与临床医生几乎没有或只有有限地讨论过未来的健康和症状负担。在所有 3 个时间点的身体和情绪症状方面，患者的预期都比他们的实际体验更为乐观。没有一致的模式表明，患者的预期准确性与测量的人口统计学或行为特征有关。回归模型显示，对未来呼吸困难（线性回归估计值，4.68；95%置信区间，2.68 至 6.68）和负面情绪（线性回归估计值，-3.04；95%置信区间，-4.78 至 1.29）的过度乐观预期与调整基线健康相关生活质量、用力呼气量后 3 个月的生活质量相关，1 秒（FEV1）和间隔临床事件（均 P < .001）。在 12 个月（呼吸困难：线性回归估计值，2.41；95%置信区间，0.45 至 4.37）和 24 个月（负面情绪：线性回归估计值，-2.39；95%置信区间，-4.67 至 0.12；呼吸困难：线性回归估计值，3.21；95%置信区间，0.82 至 5.60）时观察到类似的模式，尽管在 12 个月时，负面情绪的预期与生活质量之间没有统计学意义上的关联。
在这项 COPD 患者的队列研究中，我们发现患者对未来负面症状负担的预期过于乐观，这种不准确与随时间推移的幸福感下降有关。制定和实施改善患者症状预期的策略可能会改善以患者为中心的结局。
