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Lung cancer is the leading cause of cancer deaths for North American men and women.1 Owing to its insidious onset, 25–30% of patients presenting with non-small cell lung cancer have stage IV disease, which has a 3% 5-year survival rate.2 According to the Cancer Care Ontario Practice Guidelines Initiative, treatment options include supportive care with palliative radiation therapy as needed, with the possible addition of chemotherapy.3 The guideline suggests that chemotherapy may provide some relief of symptoms, and may increase the 1-year survival rate from 10% to 20%. However, the benefits of chemotherapy are short-lived. By 2 years there is a non-significant increase in median survival of only 6 weeks. Therefore the decision to take chemotherapy involves weighing the improvements in symptom relief and short-term survival against the side-effects and inconvenience of treatment.
There is considerable variation in opinion as to whether the benefits of chemotherapy outweigh the risks. Practice guidelines suggest that patients’ values be considered in deliberating about options.3 This is a challenging task for clinicians with limited time to counsel patients, and for patients who may be sick and anxious, and have limited education. Currently, there are no practical tools to assist patients to consider the personal importance that they attach to the benefits and risks of chemotherapy for advanced lung cancer.
Decision aids have been used with other types of patients as adjuncts to counselling. They prepare patients and families for decision-making by describing choices and their probable outcomes based on research evidence. They also assist in clarifying values or desirability of each of the expected outcomes.4 Evaluation studies have shown that decision aids help the uncertain to make decisions, and increase the likelihood that decisions are based on better knowledge, realistic expectations of outcomes, and personal values.9
Our study objective was to develop and evaluate a take-home, self-administered decision aid incorporating patient values as an adjunct to counselling.
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The decision aid was effective in preparing patients for decision-making. It was acceptable to patients, improved their knowledge of alternatives, benefits and risks, and reduced decisional conflict about what to choose. Two-thirds of thoracic surgeons and respirologists who reviewed the decision aid were comfortable with providing it to their patients, and over half indicated that they were likely or very likely to give it to future patients.
Although the results are promising, there are several study limitations that need to be acknowledged. In the patient study, the lack of a randomized controlled design means that the effects of maturation, co-intervention and testing cannot be ruled out. Decisional conflict may have naturally declined even if patients were not exposed to a decision aid. Uncertainty may have declined once the person had time to consider the choices and discuss the decision with family. Patients may also have improved their comprehension using other sources of information or with subsequent usual care counselling. The repeated use of the knowledge test may also have contributed to improvements. Future evaluations should include a randomized design with usual care controls to rule out these potential confounders.
There are also limitations to the generalization of the study. The sample size was small. Patients may have been biased toward accepting chemotherapy by virtue of being referred to the regional centre for treatment. Future evaluations should be made in thoracic surgery or respirology clinics after patients have received their initial diagnosis, but before they are seen at a cancer centre. Participants may have been influenced by the researcher, who also developed the tool, and these effects may not be replicated if the decision aid is used in another situation.
Despite these limitations, the improvement in knowledge after using the decision aid is consistent with other randomized controlled trials of decision aids.9 What is particularly noteworthy in this study is the excellent comprehension in such a symptomatic, anxious group, many of whom had limited education. Indeed, knowledge scores of around 75% were usually obtained after using the decision aid. In this study, patients’ scores were that high at baseline, presumably as a result of the explanations given by the oncologists before patient recruitment. What is more impressive is that patients were able to improve their comprehension to 90% after using a decision aid. This result supports other studies showing that reinforcement of verbal information with written material that the patient can review at home may enhance the patient’s comprehension, even if it is high after verbal information has been given.10, 11
One of the issues about which patients were not as clear after talking to their oncologists was their perceptions of the probability of benefits with chemotherapy: indeed, only seven out of 20 patients had realistic perceptions. All but three patients’ perceptions were more realistic after using the decision aid, and it is unlikely that they could have obtained appropriate probabilistic information from other sources. The improvement in perceptions of the chances of outcomes is similar to that of other studies of decision aids, and represents one of the clear benefits of decision aids over more general educational material.9
Decisional conflict also improved as hypothesized. Overall certainty about what to do improved, as well as modifiable factors contributing to certainty, such as feeling informed and clear about values, and having enough advice. This result is supported by other studies.9 The improvements in feeling informed are also verified by the improvements in the objective tests of comprehension. It is noteworthy that patients also felt clearer about their values, as this is one of the key reasons for using a decision aid. Information about outcomes may help patients to clarify their values. Moreover, the weigh-scale exercise, in which patients actively consider the personal importance of benefits and risks, also helps to clarify and communicate values.
Generally, the decision aid was acceptable to the participants. However, the fact that seven participants initially enrolled in the study and then subsequently decided not to use the decision aid suggests that the decision aid is not for everyone facing the decision about chemotherapy for stage IV non-small cell lung cancer. There are patients who do not want to spend the time using it, are too sick to use it, or feel that they are already quite certain about their decision and so do not need to use it. None the less, all patients do require some form of support. Health care providers have a great role to play in supporting patients and their family members as they make difficult treatment decisions.
To our knowledge, the practitioner survey represents the first time that practitioners who were not purposefully selected have been asked to evaluate a decision aid. Although the majority of physicians responded positively regarding its quality, acceptability and usefulness, the results must interpreted cautiously because of the low response rate and possible selection bias in responders. The physicians were required to spend up to 35 min reviewing the decision aid (this is how long it takes to listen to the audio-tape) and another 10–15 min completing the questionnaire. Another potential limitation relates to their expressed intention to use the decision aid with patients, which may not translate into actual future use. Further evaluations are warranted, with better incentives for completion and follow-up of actual use of the aids.
In conclusion, this study has been an important first step in the evaluation of an intervention supporting patients deciding about chemotherapy for stage IV non-small cell lung cancer. Specifically, the study has shown that the intervention is acceptable to patients and interested physicians, and may improve patient knowledge and reduce decisional conflict. Subsequent evaluations with usual care controls are warranted to confirm if the results can be generalized with larger groups of patients and practitioners.