Cancer patients’ attitudes toward treatment options for advanced non-small cell lung cancer: implications for patient education and decision support
Introduction
The question of whether systemic treatment constitutes the most appropriate treatment for patients with advanced non-small cell lung cancer (NSCLC) has been a topic of considerable debate in the oncology literature. Several clinical trials in this setting have demonstrated that palliative systemic treatment with Cisplatin-based poly-chemotherapy results in longer patient survival times compared to supportive care without chemotherapy, and four meta-analyses of these clinical trials have now been reported [1], [2], [3], [4]. These analyses have generally been accepted as conclusive evidence that chemotherapy affords a modest but statistically significant prolongation of survival time, at least for patients who are characteristic of those enrolled in the trials [5], [6].
Although the improvement in patient survival afforded by cisplatin-based chemotherapy has been established, the preferred treatment in the case of each individual patient is not as clear, and can be expected to vary according to the perspectives of both the physician and the patient, among other factors [7]. With regard to variation among physicians [8], [9], some authors advocate chemotherapy as standard treatment for patients with advanced NSCLC because systemic treatment offers the possibility of objective disease response, increased patient survival, symptom improvement, and improved quality of life [5], [6]. Others argue that while chemotherapy offers potential benefits, the response rates are relatively low, and may be outweighed by concerns regarding toxicity [5], [10] and treatment cost [2], [10]. The documented variation among physicians’ attitudes [8] and practice [11] suggests that a practice guideline addressing the use of chemotherapy in the setting of advanced NSCLC might be appropriate, but as Eddy [12] has pointed out, knowledge of variation in patients’ preferences for the available treatment options is central to the development of such a guideline. Hence, we were interested in how patients might weigh the risks and benefits of systemic treatment in the context of advanced NSCLC.
Patients who wish to participate in deciding what treatment they are to receive must have the opportunity to understand the risks and benefits of the available treatment options and to express their values pertaining to those risks and benefits. The notion that patients’ wishes regarding treatment be respected is established by the ethical principle of respect for the autonomy of the patient and is central to the legal doctrine of informed consent [13]. It follows that if a practice guideline addresses a decision that is sensitive to the values held by a specific individual, then the appropriate implementation of the practice guideline requires a reliable process for informing patients and for evaluating their relevant values [14]. The need for such a process is emphasized by research showing that lung cancer patients frequently hold misconceptions about their prognosis, that they frequently overestimate the likelihood of benefiting from treatment, and that their physicians frequently fail to recognize their patients’ misconceptions [15]. In this study, we describe a pilot evaluation of such a process and provide further evidence for the importance of having such a process.
The first goal of this study was to investigate how people balance the risks and benefits of chemotherapy when acting as surrogate decision makers for patients with advanced NSCLC. Previous studies have shown that individuals, when acting as surrogate decision makers, may accept or reject cancer treatment in contexts similar to that of advanced NSCLC [16], [17], [18]. Silvestri et al. studied variation in patients’ attitudes toward accepting chemotherapy [10]; they asked patients who had already received chemotherapy to indicate the minimum survival benefit they would require to choose chemotherapy in three hypothetical situations. We chose not to study patients who had received chemotherapy for lung cancer because we were interested in the judgements of people who had not yet experienced the relevant health state, as would be the case for a new patient deciding between two treatment options. In addition, we were concerned that patients’ treatment-related outcomes would substantially bias their consideration of the hypothetical scenario. We chose, instead, to study the judgements of patients who had experienced a diagnosis of, and treatment for, cancers other than lung cancer, because we believed that such patients may be able to draw on their own experience at the time of diagnosis and reflect carefully on the case scenario. We elicited patients’ judgements using a method that we previously demonstrated to be reliable in the setting of locally-advanced NSCLC [18].
Our second goal was to determine which survival endpoints are most important to patients’ decisions. It is known that framing the description of survival outcomes either as the probability of death or as the probability of living influences patients’ declared preferences [17], [19], [20]. Less is understood about how different types of descriptions of expected survival would affect patients’ judgements; life expectancy [10], [17], median survival [3], and the probability of 6-month survival [2] or 1-year survival [21] have all been suggested as appropriate endpoints in considering the benefits of treatment. We elected to study 1-year and median survival because they are the two most commonly cited end-points in this disease [21].
Our study had six objectives that addressed these goals. We wished to determine: first, each participant’s judgement about the magnitude of survival advantage that he/she felt would justify chemotherapy treatment; second, whether the median survival time or the probability of 1-year survival, or both, is information that is important to the decision; third, the extent to which participants’ judgements on the survival benefit needed to choose chemotherapy were related to their stated treatment preferences; fourth, how actively participants would prefer to be involved in making the decision should they be diagnosed with advanced NSCLC; fifth, to determine whether participants’ role preferences or their demographic characteristics were associated with their willingness to accept chemotherapy; and, finally if our method for presenting information and for clarifying individual’s values would be acceptable to them if they were to actually face the treatment decision.
Section snippets
Study participants
The study population was comprised of consecutive eligible patients who were being followed for a previously treated cancer (other than lung cancer) in the ambulatory clinics of a regional cancer center. Study eligibility criteria required that the participant had: no history of previous lung cancer; routine follow-up appointments scheduled at least 3 months apart; no active malignant disease or cancer treatment according to the last clinical record; and no history of brain metastases or major
Participant characteristics
One hundred and eighty-seven letters of invitation were sent to consecutive patients meeting the study eligibility criteria. Sixty (32%) patients participated, 26 (43%) of whom had GU malignancies, 26 (43%) of whom had breast cancer, and 8 (13%) of whom had skin cancer. Characteristics of participants are listed in Table 1. Characteristics of non-responders were not recorded.
Participants’ decisional-role preferences
As illustrated by Table 1, the majority of patients wished to have a predominantly active or a shared role in the
Discussion
We have demonstrated variation in people’s attitudes about the magnitude of benefit, in terms of length of life afforded by chemotherapy, that would justify their choosing chemotherapy for treatment of NSCLC. The variation suggests that patients who wish to participate in treatment decision making would benefit from an intervention that ensures their understanding of their situation and that helps to clarify their attitudes towards the risks and benefits associated with each treatment option.
Practice implications
We conclude that there is wide variation in surrogate patients’ thresholds for choosing C+BSC over BSC alone. Moreover, some participants base their treatment preference on median survival, whereas others base it on 1-year survival. Participants’ thresholds cannot be predicted reliably from their demographic characteristics. These findings suggest that the choice of treatment is best judged by the patient, and that different aspects of the treatment descriptors will be important to different
Acknowledgements
We thank the patients who gave their valuable time to participate in this study, as well as the volunteers who contributed to the pilot testing of the study instruments. We also thank the anonymous reviewers for their helpful comments on an earlier draft of this manuscript. This work was supported in part by a grant from the National Cancer Institute of Canada.
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