Shared decision-making in the management of pulmonary nodules: a systematic review of quantitative and qualitative studies

Uncertainty

When a pulmonary nodule was found, patients always expected to be informed of a single definite choice. However, due to the lack of sufficient evidence, uncertainty is prevalent. In many cases there is no single correct management method. ‘In most cases it’s not 100% clear.’23 Some clinicians worry that this uncertainty can affect patient emotions. ‘…clinicians may avoid engaging patients in SDM with concern for patient dissatisfaction and negative response when there is no clear best option.’9 Uncertainty is precisely the time for SDM. ‘… Although uncertainty may render SDM more challenging, clinical situations without a clear best option are in fact the most important moments to engage patients in shared decisions.’9 24 25

Willingness

Patients often do not want to be passively involved in decision-making; instead, they want to fully understand the pros and cons of various options before making a decision. ‘…I want to know the pros and cons of it before I make any decision. You don’t just go in and say I’m gonna do it.’
7 The majority of patients expressed a willingness to co-make treatment decisions with their clinician, which provided the necessary conditions for SDM.‘…Most participants expressed a preference to be actively involved in health care decisions, either patient controlled (24%) or shared with their physician (58%).’20 ‘…The vast majority of patients want to be engaged in a discussion of management options with their doctors and to have their opinion taken into account, both in general and specifically in the setting of pulmonary nodule evaluation.’9 However, SDM is currently not well implemented in the clinic, and patients’ preferences and values are often not considered. ‘Most participants did not feel included by the clinician in the decisions surrounding workup of the nodule’, ‘…All I’m doing is being a patient, you know? No doctors have been asking me my opinion.’7 There is an association between the self-reported behaviour of engaging patients in SDM, and physician comfort with nodule evaluation. ‘Clinicians who reported performing SDM indicated greater comfort with pulmonary nodule evaluation, as compared with those endorsing other decision-making approaches.’9

Patients’ lack of knowledge

Patients’ lack of knowledge about pulmonary nodule management is a major obstacle to SDM. Patients are often confused by the large number of medical terms presented in the report. ‘Many patients in our study reported they did not understand medical jargon in letters and were left uncertain about the meaning of their results….’
8 Patients know little about pulmonary nodule except that it can be caused by lung cancer, and often attribute some of their symptoms to it. ‘A substantial minority (41%) believed that, if untreated, the nodule would turn……half of the patients (50%) believed that their nodule caused shortness of breath. Similarly, patients commonly attributed cough (41%) or pain (back pain in 27% of cases and chest pain in 24%) to the nodule.’
26 Patients lack information about their own risk of malignancy, and sometimes treat physician-recommended follow-up intervals as an indicator of risk. ‘…they reported concern about the possibility of cancer along with inadequate knowledge of the risk of malignancy…Several patients correctly interpreted the interval of follow-up imaging as a surrogate for cancer risk although few discussed this aspect of surveillance with their primary care providers.’
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Patients always have little knowledge about options for the management of pulmonary nodules. For example, some patients are dissatisfied with not being able to get a biopsy right away but waiting for CT follow-up. ‘Oh, I wouldn’t have minded a biopsy right away. Because then you know. With the family history I think like, why wait a whole year? Because that’s a whole year of me thinking about it. And that’s a year I got to worry about it. I’m an insomniac, I already got enough sleepless nights.’
7 They do not understand the purpose and significance of CT surveillance and feel that they are in a passive position. ‘Well, as far as I know there is no long-term plan. It’s just like, ‘We’re gonna wait and see what’s going to happen in 6 months or a year.’ That’s not a plan.’
8 Some patients are hesitant to adhere to follow-up decisions after being advised by their doctors. ‘…I kind of felt like it left the ball hanging in my court – do I really need to do this or not? And I still feel that way today. I don’t really know if I should repeat this or not.’
7 There are even patients who are still worried when the follow-up finished. ‘Many would feel uncomfortable stopping surveillance (10% would feel “extremely nervous” and 29% “somewhat nervous”) even if their doctor told them that no further computed tomography (CT) scans were needed.’
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Experience

The implement of SDM in clinical work is related to the doctor’s experience, and the results of the literature review show that doctors with less work experience are concerned that sharing decision-making will make the situation more complicated. ‘Clinicians who reported engaging in SDM had more years in practice…less experienced clinicians may be concerned that adding patient input may only further complicate and confuse the decision making process.’9 Experienced doctors tend to think more from the perspective of the patient. ‘Alternatively, more experienced clinicians may recognize the need to consider patient preferences given there is no single “right” answer for how to proceed.’9 23 Some doctors also have concerns that patients will make the inappropriate decision that goes against the guidelines. ‘…patients may make a decision that is inconsistent with guideline recommendations if, for example, patients with subcentimeter nodules opt for biopsy (with the associated risks of bleeding or pneumothorax) rather than the safer option of active surveillance.’7 In addition, in order to better carry out SDM, doctors also need to have certain communication skills. ‘…graduate medical education falls short in teaching physicians skills in patient-centered communication and SDM.’23 Wiener et al summarised seven patient-acceptable strategies for pulmonary nodule communication that can help physicians communicate with patients.27

Misconception

There are many misconceptions between clinicians and patients regarding pulmonary nodules. For example, clinicians believe that small pulmonary nodules do not need to be particularly concerned, but patients may not think so, resulting in certain misunderstandings. ‘Perhaps as a result of this mismatch between patient and clinician concerns, clinicians do not typically allocate as much time and attention to discussing nodules with patients as patients would like.’
22 Clinicians do not touch the word ‘cancer’ lightly in their conversations because they worry that patients will become anxious. ‘We usually don’t mention lung cancer specifically; we leave it a bit more nebulous.’
28 Similarly, some physicians provide patients with little information on malignancy risk and do not provide individualised malignancy risk assessments. ‘Indeed, clinicians themselves have reported that they often do not supply information on cancer risk or even discuss cancer at all for fear of worrying patients with incidental nodules.’
26 ‘Most did not use “risk calculators” to predict lung cancer risk…’
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However, contrary to the doctor’s opinion, most patients want to know their probability of developing lung cancer and do not want the doctor to hide it. ‘I think I’d like to know if it was benign or not. That was the big thing with me.’
7 ‘Don’t hide nothing.…Tell me the truth, tell me in my language, so I understand what you’re saying.’
27 Patients often overestimate their malignancy risk if the information given by their doctors is insufficient. ‘Only a quarter (25%) of respondents estimated their cancer risk accurately (within 15 percentage points); most grossly overestimated the likelihood of a malignant nodule.’
26 Therefore, the malignancy risk probability provided by doctors may not only not aggravate the patient’s pain, but often be lower than the patient’s own estimate of cancer. ‘In most cases, this information was reassuring because the physician’s estimate was much lower than the patient’s assumption.’
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Distress

Most patients will have some negative emotions after finding pulmonary nodules, such as distress. ‘Nodule-related distress was common. Half of patients reported distress: 27% mild and 24% clinically significant distress (12% moderate and 12% severe). That a quarter of patients experienced clinically significant nodule-related distress.’
26 There are many reasons for negative emotions of patients. ‘Although patients cited many causes of distress, most patients cited uncertainty in diagnosis, lack of control, and fear of cancer as serious concerns.’
26 The researchers believe that the doctors’ effective interpretation could reduce distress levels in patients. ‘Higher satisfaction with the clinician’s explanation and reporting that care could not be better were associated with decreased distress.’
30 Negative emotions affect the decision-making of patients to a certain extent. For example, doctors may shorten the interval of follow-up because of patients’ anxiety. ‘…participants in qualitative interviews, particularly those who seemed more distressed, frequently reported that they desired more aggressive follow-up than clinically indicated.’
29 Some patients with high distress levels tend to opt for more aggressive and timely tests, such as biopsies. ‘most of patients’ distress related to a desire for further, immediate testing (such as obtaining a biopsy) rather than continuing with surveillance imaging.’
28 In addition, negative emotions may also affect follow-up compliance. ‘This type of distress may lead to poor adherence with evaluation.’
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Preference

Many patients with pulmonary nodules choose aggressive options, often preferring biopsy or surgery rather than CT surveillance. ‘Most participants we surveyed expressed a preference for some type of biopsy over observation alone at all levels of nodule risk evaluated (between 10% and 70%), with the majority choosing surgical biopsy when the risk of malignancy was 30%.’
20 The willingness to operate is more significant with the increase of malignancy probability. When it exceeds 70%, more than 80% of patients choose surgical resection. This aggressive preference may be related to the uncertainty in the diagnosis of pulmonary nodules. ‘…the uncertainty about the cause, may motivate some patients to seek a definitive diagnosis through biopsy, even if the risk of malignancy is relatively low.’
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Physicians also have different decision preferences based on some considerations when making recommendations for patients. Some physicians assume themselves as patients, think about what is the most acceptable option for them, and then suggest that option to the patient. ‘Usually, I’m guided by my feeling about what is the best advice…advice that I would hope someone would give me.’
23 Physicians may be influenced by the life expectancy of their patients when making decisions, opting for more proactive options, such as biopsies, for young, healthy patients. ‘If it’s a young, healthy person and there is any chance [of cancer], I generally don’t mess around.…I just decide whether or not it can be resected, and if it can be, then resect it.’ In addition, physicians’ anxiety about cancer also influences the advice they give to patients, such as wanting to employ aggressive management strategies when they personally feel the likelihood of malignancy is high (even if the risk estimated by the model is low). ‘I follow them a little more closely [than the guidelines suggest], whether there is [an] indication for that or not. I think that’s just treating my anxiety.’
23 Some doctors worry that if they choose too conservatively, they will cause medical disputes and get themselves into trouble. ‘I [would] heavily document that the patient did not want a biopsy at the current time. We selected surveillance, even though I didn’t think this was the best option.’
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In the current clinical management of pulmonary nodules, whether the patient’s personal preference was taken into account in decision-making varies greatly and includes three types: always incorporating, seldom incorporating and conditional incorporating. Some physicians believe that due to limited evidence, there is no single right choice, so it is important to consider individual patient preferences.9 23 And some physicians feel they prefer to make unilateral decisions, which they believe are the strategies their patients are most comfortable with. ‘A majority of times I’ve made the decision myself.… We’ll basically do something in the best of [the patient’s] interest. And a majority of the time, I have not had pushback.’
23 In addition, some physicians report considering patient preference only when the patient was clearly uncomfortable with the recommended regimen. ‘Some people are super worried…They give you a story about their brother who had cancer and had a very bad experience because the doctors didn’t get it in time and now they have metastatic cancer.’
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