Expectations About the Effectiveness of Radiation Therapy Among Patients With Incurable Lung Cancer

Abstract

INTRODUCTION

Lung cancer is the leading cause of cancer death in both men and women. About half of patients have metastatic disease at diagnosis, with most surviving less than 1 year, even with intensive therapies.^1,2 Therefore, the clinical focus in these patients is not only to extend life but also to manage symptoms and maintain quality of life. Radiation therapy (RT) can be used to palliate symptoms from intrathoracic disease as well as symptomatic metastases, and more than 50% of patients with stage IV lung cancer receive RT at some point in their disease course.³ Although palliative RT is effective at relieving symptoms, it is not curative, and treatments typically require daily visits to specialized treatment facilities, which can impose significant time and financial burdens on patients and their families.

There is a wide range in the number of palliative RT treatments that may be delivered, and prior work suggests that many patients may receive lengthier courses than necessary.^4–8 Although this may simply reflect provider and patient preferences or differences in clinical scenarios, prior studies suggest that providers not only may be overly optimistic about patient prognosis but may also have difficulty communicating prognosis to patients with terminal cancer.^9–12 In addition, considerable evidence suggests that patients with cancer may hold unrealistic beliefs about prognosis and the potential efficacy of treatment.^12–15 By using data from the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS), our group recently found that patients with metastatic lung and colon cancer frequently did not understand that chemotherapy was not curative.¹⁶ Because RT is frequently used in the palliative care of patients with lung cancer, it is important for patients to understand both the goals and limitations of RT in order to make the best decisions about the care they elect to receive near the end of life. We therefore sought to characterize patient expectations about the goals of RT in a population- and health system–based cohort of patients with incurable lung cancer and to compare patient expectations about chemotherapy versus radiation.

PATIENTS AND METHODS

Study Cohort

We identified patients who presented with incurable lung cancer, defined as stage IV or IIIB with malignant effusion at diagnosis (American Joint Committee on Cancer [AJCC] Cancer Staging Handbook, 6th edition).¹ The study cohort included patients who reported that they had received or were scheduled to have RT and who completed survey items on their expectations about RT. Since these items were not included on surveys given to surrogates of deceased patients or a version of the brief patient survey used at some of the data collection sites, patients who had only these data were not eligible. Figure 1 summarizes the construction of the study cohort.

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Fig 1.

Study cohort. CanCORS, Cancer Care Outcomes Research and Surveillance Consortium; RT, radiation therapy.

RESULTS

Of 5,013 patients with a diagnosis of lung cancer enrolled onto CanCORS with survey data, 2,044 had incurable disease at diagnosis. Of these, at the time of the survey, 832 patients (41%) had either received or had been scheduled to receive RT, and 433 were alive. Of these, 384 were asked questions about their expectations about RT. Table 1 summarizes the characteristics of patients in our cohort. The median age at the time of diagnosis was 63 years, and the median survival was 11.5 months. Among our cohort, 345 (90%) had stage IV disease at diagnosis and 314 (82%) had non–small-cell histology.

Regarding expectations about the effectiveness of RT, 67% felt that RT was very or somewhat likely to help them with problems they were having because of their cancer, 78% felt that RT was very or somewhat likely to help them live longer, and 43% felt that it was very or somewhat likely to cure their cancer. Patient responses to survey items on expectations about the effectiveness of RT are shown in Figure 2. We did not observe significant differences in overall survival on the basis of patient expectations about the likelihood of RT helping them live longer or curing their cancer (data not shown).

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Fig 2.

Patient expectations about the effectiveness of radiation therapy (RT; n = 384). (A) Radiation would help you with problems you were having because of your lung cancer? (B) Radiation would help you live longer? (C) Radiation would cure your lung cancer? NA, not applicable.

The proportion of patients who did not accurately understand that palliative RT was “not at all likely” to cure their cancer was 64%. Table 2 shows the unadjusted and adjusted analyses of factors associated with inaccurate beliefs about cure from RT. On multivariable analysis, older patients were more likely to have inaccurate beliefs (with age younger than 55 years as the reference, odds ratio [OR] was 1.44 for ages 55 to 64 years, 1.78 for ages 65 to 74 years, and 2.45 for ages older than 74 years; overall P = .02) as were patients of nonwhite race (African American OR, 1.48; other nonwhites OR, 3.32; overall P = .009), and patients whose surveys were completed by surrogates because they were too sick were less likely to have inaccurate beliefs (OR, 0.54; P = .04). Likelihood of inaccurate beliefs also varied by PDCR site (overall P = .04). To assess the robustness of our model, we also tested an alternate specification of the outcome variable by using ordinal logistic regression of the four-level response about treatment effectiveness (excluding responses of “don't know” or refused). This model specification did not substantially alter our findings.

Among 285 patients in our cohort who also completed survey items on their expectations about chemotherapy, we found that patients with inaccurate beliefs about RT were significantly more likely to also have inaccurate beliefs about chemotherapy (P = .002 by McNemar's test); 92% of patients with inaccurate beliefs about RT also had inaccurate beliefs about chemotherapy (Table 3).

DISCUSSION

Surveying a population- and health system–based cohort of patients with incurable lung cancer showed that a large proportion held inaccurate beliefs about the likelihood of cure from RT: 64% did not understand that RT was not at all likely to cure them. On the other hand, most patients treated with palliative RT believed that it could help them, with 67% endorsing the view that RT was very or somewhat likely to help them with problems from their cancer and 78% believing that it was very or somewhat likely to help them live longer. These results are consistent with our group's recent finding that 69% of patients receiving chemotherapy for metastatic lung cancer did not understand that it was not at all likely to cure their cancer.¹⁶

Several studies have demonstrated that physicians tend to be overly optimistic when predicting expected survival of patients with terminal cancers,^9,24 including those referred for palliative RT.¹⁰ Others have identified challenges in communication between providers and patients referred for palliative treatment, including disclosure of prognosis, presentation of management options, assessment of understanding, and supportive remarks.^11,12,25 In one study, hospice physicians were surveyed about their estimate of the patient's prognosis, as well as what prognosis the physician would communicate. In addition to being overly optimistic concerning their patients' prognosis, only 37% favored a frank disclosure of prognosis. Of those that favored discrepant disclosure, most favored communication of overly optimistic estimates of prognosis.²⁶

Given these challenges, it is not surprising that inaccurate patient beliefs regarding cure from cancer treatment arise. One study of patients with metastatic cancer found that one-third believed that they had local or regional disease and were being treated for cure.¹³ Even when presented with accurate information, many patients may retain inaccurate beliefs. A pilot study in patients with advanced non–small-cell lung cancer showed that, even after presenting patients with a decision aid that improved their understanding of the goals, toxicity, and prognosis from chemotherapy, many patients retained the inaccurate belief that their cancer was curable.²⁷ Our study suggests that similar concerns may apply to RT.

Poor understanding of treatment goals and prognosis are problematic for both medical and policy reasons. Patients cannot make well-informed decisions about their end-of-life care, taking into account risks and benefits of treatment, if they hold inaccurate beliefs about the goals of care. Studies have shown that patients with advanced cancer who do not understand and overestimate their prognosis are more likely to pursue intensive therapies near the end of life.^14,28 These therapies may reduce quality of remaining life and incur substantial costs for patients with limited life expectancy. In particular, palliative RT requires daily visits for treatment, which can be burdensome for patients and families. It is possible that patients who understand that RT is not at all likely to result in cure might choose to forgo RT or pursue shorter courses of treatment. Although randomized studies suggest that short courses of RT are equally effective in many patients with poor prognosis,²⁹ lengthier courses are more commonly given.⁸

Interventions designed to introduce patients to palliative care services earlier in the disease process have been shown to be associated with greater patient understanding of prognosis and to reduce the use of chemotherapy near the end of life.¹⁴ Although our study finds much room for improvement in patient understanding of RT, it remains to be seen whether similar interventions would be effective. Our finding that inaccurate beliefs about RT were significantly associated with inaccurate beliefs about chemotherapy indicates that the gap in understanding exists for multiple provider types and treatment modalities. Patients may lack an overall understanding of their disease process and might benefit from broader discussions that encompass more than just the risks and benefits of a particular treatment modality.

Our observation that inaccurate beliefs were associated with older age and nonwhite race, even after controlling for other factors such as education and income, suggests that generational or cultural differences may influence patients' expectations about cure and that greater efforts to improve communication with these patients may be warranted. It is not surprising that patients who required a surrogate to complete their survey because they were too sick were more likely to have accurate expectations about the likelihood of cure. This argues, however, that patients need to be better informed about their prognosis earlier in the disease process and while they can still have a meaningful impact on their course of care.

A primary strength of our study is that it surveyed a diverse population of patients with lung cancer on their expectations about treatment. Prior studies have typically included only highly selected groups of patients at single institutions. However, the population- and health system–based design also resulted in limitations in the level of detail that could be obtained. Furthermore, although the CanCORS study made an effort to recruit a representative sample of patients with lung cancer, we were not able to ascertain the expectations of patients who declined to participate in the study, were too sick to complete the survey, or were deceased by the time it was given. It is possible that patients who participated were different from those who did not, and it is possible that patients who died quickly had a different understanding of the goals of treatment. The survey was conducted following diagnosis, and therefore only patients receiving or scheduled for palliative RT soon after diagnosis responded to survey questions about RT. It is possible that patients receiving RT later in their disease course, possibly after they had progressed through other therapies, would have different expectations about the likelihood of cure. Finally, our study could not distinguish between patients who never received accurate information from those who received accurate information that they did not understand, accept, or recall, nor could we ascertain the reasons behind patients' expectations, whether they were based on discussions with their physicians or through other sources of information. To design effective interventions, we need better understanding of whether lack of clear information from physicians or, alternatively, patient denial is the primary impediment to realistic treatment expectations. If denial is the primary mechanism, then alternative support strategies to help patients cope with terminal illness must be put into place.

Nonetheless, this study provides insight into patients' perceptions about the goals of RT in incurable lung cancer and suggests that, although patients are often optimistic that RT will help them, many hold the unrealistic expectation that RT may cure them. Clearly more attention needs to be paid to ensure that clear and accurate information about the goals and limitations of RT is presented and reinforced to patients and their families and that providers are appropriately trained to have these discussions. Additional work is also needed to better comprehend the barriers to communication and understanding faced by patients receiving RT for incurable lung cancer and to identify methods by which to overcome these challenges.

Footnotes

REFERENCES