Abstract
Oncologic patients often misunderstand the benefits and toxicities of palliative-intent therapies. This exploratory, single-center study investigated how these perceptions evolve, their impact on end-of-life (EOL) care quality, and regret. English-speaking adults were surveyed longitudinally about treatment expectations. Patient perceptions were compared to their oncologists’ assessments. Of 119 patients (mean age 65, 61.8% male), 80 (67%) completed at least 1 follow-up survey. Patients’ perceptions of treatment response, symptom palliation, and survival did not become more accurate over time. Perceptions over cure tended to become more accurate, and perceptions of toxicity were consistently accurate. Among deceased participants (n = 47), 55.1% experienced poor quality EOL care, based on a composite measure of EOL quality. Perception accuracy at baseline was not associated with EOL quality outcomes (P = .93). Patients with hospice involvement had less accurate perceptions (P = .03). Twenty-nine patients completed the end-of-treatment survey, none expressed regret. Findings suggest patients’ expectations of treatment do not become more accurate over time. EOL outcomes were not associated with more accurate perceptions. Surviving patients did not regret treatment.
Keywords
Introduction
Contemporary cancer care strives for high-quality end-of-life (EOL) care. This includes comprehensive assessment of pain and other symptoms, dying at home, avoiding prolongation of the dying process, and avoiding time in the emergency department (ED) and intensive care unit (ICU) at the EOL.1–3 As cancer-directed treatment options increase with a large variation in likelihood and duration of response as well treatment burden, treatment decisions become more challenging.4–7 High-quality EOL care presumes that patients with advanced cancer understand their potential treatment outcomes and make informed decisions about their care.8,9 However, numerous studies demonstrate inaccurate prognostic perceptions: between 37% and 81% of patients with advanced cancer undergoing palliative-intent treatment believe their cancer is potentially curable.8,10
Independent of potential for cure,9–14 cancer treatments offer potential benefits, such as shrinking tumors, palliating symptoms, and extending life. Hence, our prior work explored the understanding of treatment goals among patients with advanced solid tumors. Compared with their oncologists, patients overestimated the chances of tumor response, symptom palliation, and survival benefit, but accurately perceived the likelihood of toxicity. 15
Prior studies measure prognostic understanding at a single time point, so we lack knowledge about how patients’ perceptions evolve over time. Changes in patient expectations of treatment may affect EOL care received.13,16 Among bereaved surrogates of patients with cancer, regret is common, 13 raising the question of whether this regret stems from misunderstanding of treatment's outcomes. 17
This secondary exploratory analysis of our prior single-center prospective investigation 15 aims to: (1) describe the evolution of English-speaking adult patients’ perceptions of treatment outcomes over time; (2) analyze associations between accuracy of estimated treatment response and EOL care quality metrics for deceased patients; and (3) estimate the frequency of decisional regret among surviving participants.
Methods
Eligible subjects were 18 years or older, had metastatic cancer, and were starting nonhormonal treatment with noncurative intent. Participants provided written informed consent and completed questionnaires during clinic visits. The Dana-Farber/Harvard Cancer Center Institutional Review Board approved the study.
Study participants and their oncologists completed surveys assessing the perceived likelihood of benefits (including survival benefit, tumor response, and symptom palliation) and risks (toxicity and other side effects) of the palliative treatment 15 (Supplemental Table 1). Since surveys were self-administered and only available in English, the study population was limited to English-speaking individuals. Questions related to treatment expectations were adapted from prior studies14,16,18 and were measured on a scale of 0% to 100%. Patients and oncologists were blinded to other's responses. Perception discordance was calculated by subtracting the patient from the physician-assessed likelihood of benefit. We defined accuracy as patients scoring within 10% of their oncologist, by dividing the range of median differences (0%-30% across all domains) into 3 categories.
To monitor changes in the perception of treatment benefits, surveys were repeated every 6 to 8 weeks (up to 3 follow-up surveys) until treatment cessation due to treatment completion, disease progression, toxicity, or death. Characteristics of subjects were compared between those who did and did not complete at least 1 follow-up questionnaire, using a Mann–Whitney U test for continuous data and a chi-square test or Fisher's exact test for categorical data. A signed rank test was used to assess whether the difference in patients’ perceptions relative to their physicians’ estimation changed over time. The decision regret scale was administered to surviving participants completing their third questionnaire.
All data collection occurred through REDCap,19,20 hosted at Beth Israel Deaconess Medical Center in Boston, MA.
The primary measure of EOL care quality was a composite endpoint where any of the following constituted poor quality: (1) ED visits; (2) ICU admissions; (3) hospitalizations within 30 days of death; or (4) chemotherapy within 14 days of death. 21 We measured means and 95% confidence intervals (CIs) for difference between patient perceptions of treatment response relative to physician expectations and calculated associations with EOL measures adjusted for age, gender, race (white vs non-white), and cancer type.
Results
Of 183 patients approached, 128 patients consented to participate. Of these, 3 were ineligible and 6 were missing survey data necessary to calculate misperception. Of the 109 patients alive at 8 weeks, 80 (73.4%) completed at least 1 follow-up and/or end-of-treatment survey. Of those, 76 had sufficient responses to be included in this analysis. Demographic characteristics of enrolled subjects and approached nonrespondents are shown in Table 1.
Patient Demographics.
Abbreviation: EOL, end-of-life.
Data are shown as median (interquartile range) or as n (%).
*P value compares the full cohort and the nonrespondents; a Mann–Whitney U test was used for continuous data, and a chi square test or Fisher's exact test was used for categorical data.
At baseline, patients significantly overestimated the likelihood of treatment response, symptom palliation, survival benefit, and cure (all P ≤ .001) relative to their physicians’ estimations, while their expectations of toxicity aligned (P = .37) with their physicians’ estimations (Table 2). Patients’ perceptions of treatment response, symptom palliation, and survival did not become more accurate over time. In contrast, patients’ perceptions regarding cure tended to converge with their physicians’, and perceptions of toxicity were consistently accurate.
Patient and Physician Perception of Treatment Response at Baseline and Follow-Up.
Data are shown as median (interquartile range); positive numbers indicate that patients are optimistic relative to physicians, and negative numbers indicate that patients are pessimistic compared to physicians.
We collected EOL care quality measures on 47 patients (Supplemental Table 2). Their baseline characteristics are outlined in Table 1. Overall, 55.1% of patients experienced poor quality EOL care. Patients’ accuracy of estimated treatment response at baseline was similar among patients with and without poor quality EOL care (16.5, 95% CI: 3.74-29.2 vs 17.2, 95% CI: 8.1-26.3, respectively; P = .93). Patients with any hospice involvement before death had a significantly less accurate perception of treatment response at baseline compared to those with no hospice involvement (27.7, 95% CI: 16.0-39.4 vs 10.5, 95% CI: 1.4-19.6, respectively; P = .03). There was no significant difference for other individual EOL care quality measures.
Lastly, 29 patients completed the end-of-treatment survey. The median survey response time was 41.2 weeks (interquartile range [IQR] 36.4-47.9). Nearly all patients (96.3%) agreed that undergoing treatment was the correct decision, and none regretted their choice. Eighty-two percent agreed that they would make the same choice if they had to do it again. However, 11.1% of patients agreed that the treatment did them a lot of harm.
Discussion
In this secondary analysis of a prospective single-center study, we found that patients’ perceptions of their treatment response did not become closer to that of their physician's over time, except for perceptions of cure. In addition, we found that higher EOL care quality measures did not correlate with the accuracy of perceived treatment response, and that surviving participants did not regret their decision to pursue palliative-intent cancer-directed therapy.
We found no changes in patients’ perceptions of treatment response, survival, symptom benefit, or toxicity over time, similarly to the existing literature. 16 The persistence of unrealistic optimism found in our study suggests an opportunity for improved communication practices by oncologists. 11 For example, although doctors communicate the incurability of advanced malignancies during initial consultations, they tend not to revisit prognosis at subsequent visits, instead focusing on treatment options rather than prognosis or disease progression.11,22 Therefore, reassessing patient understanding of their disease and the expectations for treatment over time seems critical to achieve truly informed consent, shared decision-making, and optimal EOL planning.
Our work found that the accuracy of estimating treatment response was not significantly associated with the quality of EOL care. We also found that patients who were more optimistic than their oncologists about their prognosis were more likely to have hospice involvement prior to their death. This contradicts other data previously reported, which found that poor prognostic understanding was associated with lower odds of hospice use. 23 While we assessed perceptions over time, we were unable to uniformly evaluate all participants shortly before death due to the unpredictability of each patient's trajectory; thus, patients may have changed their perception shortly before death and after their last study assessment.
Among the participants who survived until the end of the study, none regretted their decision to receive palliative treatment, and nearly all agreed that treatment was the right decision. The small subset of the sample (29 of the original 119) still alive to complete the decisional regret questionnaire had an average survival of 41 weeks and only 11% of them reported harm from treatment. Further research assessing decisional regret should endeavor to include patients with positive and negative outcomes of their treatment. The impact of regret on family members is also worth examining, since bereaved family members often report decisional regret after the patient dies.13,24,25
The strengths of this study are its prospective design and the diversity of cancer diagnoses and cancer-directed therapies included. 15 In addition, our study examined patients’ perceptions of treatment benefits, toxicities, and symptom palliation whereas many other studies have concentrated exclusively on perceptions of curability. Our study's limitations include its single-center design and the predominantly white and English-speaking demographic which limit generalizability. Our small sample size may have been underpowered to detect statistically significant differences and perform extensive adjustment for confounders. Additionally, participants completed questionnaires independently, which may lead to misunderstandings.
Conclusion
Further research is warranted to explore perceptions surrounding symptom palliation, toxicities, survival benefit, and treatment benefits. More longitudinal, comprehensive examinations will help understand what prompts patients to alter their perceptions and how perceptions relate cancer treatment decisions and EOL care quality. These results highlight opportunities for improved communication by physicians and the importance of repeated assessment of patients’ treatment understanding over time. Realistic treatment expectations could potentially assist with EOL planning and mitigating decisional regret.
Supplemental Material
sj-docx-1-jpx-10.1177_23743735261416349 - Supplemental material for Trends in Patient Misperception and Decisional Regret During Treatment for Advanced Cancer: An Exploratory, Single-Center Study of English-Speaking Adults
Supplemental material, sj-docx-1-jpx-10.1177_23743735261416349 for Trends in Patient Misperception and Decisional Regret During Treatment for Advanced Cancer: An Exploratory, Single-Center Study of English-Speaking Adults by Morgane Bulpin, Pedro Luiz Lage Bodour Danielian, Neha Garg, Laura Elizabeth Dodge, Eric Miller, David Einstein, Rushad Patell and Mary Kathleen Buss in Journal of Patient Experience
Footnotes
Consent for Publication
All study participants provided informed consent for publication.
Consent to Participate
Written informed consent was obtained from all individual participants included in the study.
Data Availability
The data that support the findings of this study are available from the corresponding author upon reasonable request. Due to the sensitive nature of patient information and ethical restrictions imposed by the institutional review board, the data are not publicly available.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethics Approval
The Dana-Farber/Harvard Cancer Center Institutional Review Board approved the study.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
Please find the following supplemental material available below.
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