Patients With COPD, Overoptimistic Future Expectations Report Worse Well-Being Over Time

Patients with chronic obstructive pulmonary disease (COPD) who have overoptimistic expectations for their future negative symptom burdens have reported worse well-being over time, according to a study published in JAMA Network Open.

The researchers explained that preference-sensitive, patient-centered health care maximizes patient well-being, but it requires them to form expectations for future health outcomes; they may struggle with this as it involves confronting possibilities of increasing illness burden or death.

Past studies found that patients having overoptimistic expectations may help them cope with unfavorable prognoses, prevent adaptation to future hardships, and impair the selection of behaviors or treatments most likely to result in desired outcomes. Despite these findings, the researchers explained that knowledge gaps remain “regarding the frequency and degree of inaccurate expectations, the directions of these inaccuracies, and the factors associated with expectation accuracy.”

Therefore, they conducted a prospective cohort study from December 2017 to July 2021 that measured health expectation accuracy among patients with COPD. The researchers hypothesized that many patients would hold overoptimistic expectations, which would be associated with decreased health-related quality of life (HRQOL).

To conduct the study, the researchers approached and recruited patients from primary care and pulmonary specialty outpatient clinics within a single, large health system; the consent rate among approached patients was 80.0%. Eligible patients included those presenting for a scheduled appointment with a documented COPD diagnosis and at least 1 additional marker of severe illness, like long-term oxygen therapy use, a body mass index below 21, or recent hospitalizations for acute exacerbations of COPD.

The researchers explained that, at the time of enrollment, patients reported their dyspnea during the prior week using the Baseline Dyspnea Index (BDI), which captures dyspnea burden affecting functional impairment, magnitude of task, and magnitude of effort. They then made predictions for 3, 12, and 24 months later using the Transition Dyspnea Index (TDI), which measures the change in dyspnea from the baseline in the same domains; patients also used this to report their actual symptoms at each follow-up.

At each follow-up, each patient had 2 scores: the expected TDI score documented at enrollment and the actual TDI score. The researchers explained that they calculated the accuracy of a patient’s expectations by determining the differences between the 2 scores at each time point.

Additionally, the researchers assessed patient HRQL using the St. George’s Respiratory Questionnaire-COPD (SGRQ-C), which measures how COPD affects overall health, daily life, and perceived well-being, considering changes in patients’ lives. As a secondary outcome, they used the Patient Health Questionnaire-9 (PHQ-9), a self-report questionnaire specific for major depressive disorder identification, to assess patients’ psychological distress.

Overoptimistic patient

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The study population consisted of 207 patients, including 120 women (58.0%), 118 Black patients (57.0%), and 79 White patients (38.2%); the median age of patients was 65 years (range, 42.0-86.0 years). During the study period, 69.1% of enrolled patients remained active. Conversely, 24.6% of patients died or became too ill to participate, and 15.0% withdrew or did not follow up for at least 1 time point.

When asked if they discussed future health and symptom burdens with clinicians, 170 patients (82.1%) reported never discussing it, 115 (55.6%) reported never discussing their expected emotions, 81 (39.1%) reported never discussing their medical care goals, and 69 (33.3%) had never discussed their expected physical well-being.

Overall, the researchers noted that patients were overoptimistic in all areas during all time points. Patients scored their positive emotions a mean (standard deviation [SD]) 0.26 (1.23) lower than expected at 3 months (95% CI, 0.09-0.44; P = .003), 0.49 (1.34) lower than expected at 12 months (95% CI, 0.28-0.69; P = .01), and 0.53 (1.42) points lower at 24 months (95% CI, 0.30-0.77; P = .04). Conversely, patients scored their negative emotions a mean (SD) 0.19 (1.03) points higher than expected at 3 months (95% CI, –0.34 to –0.04; P < .001), 0.28 (1.14) points higher at 12 months (95% CI, –0.46 to –0.11; P = .001), and 0.29 (1.39) points higher at 24 months (95% CI, –0.52 to –0.06; P < .001).

Also, patients experienced more dyspnea than expected as they scored a mean (SD) 0.15 (0.98) points higher than projected at 3 months (95% CI, 0.01-0.29; P < .001), 0.48 (1.11) points higher at 12 months (95% CI, 0.31-0.65; P = .01), and 0.19 (1.21) points higher at 24 months (95% CI, –0.01-0.39; P = .07).

The researchers explained that the differences in predicted emotions and dyspnea “reflect the accuracy of patients’ personal projections of their future health.”

“In all cases, the mean projection was more optimistic than what was eventually observed (with all results significant except for dyspnea at 24 months), with trends toward greater inaccuracies at 12 and 24 months than at 3 months,” the authors wrote. “Patients expected to have positive emotions, lower amounts of negative emotions, and less dyspnea than they later experienced.”

The researchers also acknowledged their study’s limitations, one being that their study population consisted of patients from a single health system, meaning that cultural differences across health systems or geographic regions could limit the generalizability of their findings. Despite the limitations, the researchers explained that their findings showed that strategies need to be implemented to help patients better understand their illness.

“Given our findings, strategies to improve clinician communication and provide structured opportunities for patients to reflect on potential futures are likely to better align patients’ expectations with probable or potential outcomes,” the authors wrote. “In this manner, clinician- or patient-facing interventions that improve expectation accuracy may directly improve patients’ serious illness experiences, alignment of medical decisions with their values, and clinical outcomes.”

Reference

Hart JL, Summer AE, Ogunduyile L, et al. Accuracy of expected symptoms and subsequent quality of life measures among adults with COPD. JAMA Netw Open. 2023;6(11):e2344030. doi:10.1001/jamanetworkopen.2023.44030