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Abstract
Rationale: Millions of patients are diagnosed with pulmonary nodules every year. Increased distress may be a common harm, but methods of mitigating this distress are unclear.
Objectives: We aimed to determine whether high-quality communication regarding the discovery of a pulmonary nodule is associated with a lower level of patient distress.
Methods: We conducted a prospective, repeated-measures cohort study of 121 patients with newly reported, incidentally detected pulmonary nodules. The primary exposure was participant-reported quality of communication regarding the nodule. Secondary exposures included communication measures regarding participants’ values, preferences, and decision making. The main outcome was nodule-related distress measured using the Impact of Event Scale. We used adjusted generalized estimating equations to measure the association between nodule communication quality and at least mild distress.
Measurements and Main Results: Most participants (57%) reported at least mild distress at least once. While average distress scores decreased over time, one-fourth still had elevated distress after 2 years of surveillance for a nodule. The average calculated risk of cancer at baseline was 10% (SD, 13%), but 52.4% believed they had a greater than 30% risk of lung cancer at baseline, and this percentage remained fairly constant at all visits. High-quality nodule communication was associated with decreased odds of distress (adjusted odds ratio, 0.42; 95% confidence interval, 0.24–0.73). Lower-quality communication processes regarding participants’ values and preferences were also associated with increased odds of distress, but concordance between the actual and preferred decision-making roles was not.
Conclusions: Among patients with incidentally discovered pulmonary nodules, distress is common and persistent for about 25%. Many participants substantially overestimate their risk of lung cancer. Incorporating patients’ values and preferences into communication about a pulmonary nodule and its evaluation may mitigate distress.
Every year, millions of patients are diagnosed with pulmonary nodules (1, 2). With nascent lung cancer screening implementation efforts, even more patients will be identified as having a nodule (3). Although the vast majority of nodules are ultimately found to be benign (4, 5), it is challenging to determine if a nodule is benign when first identified. Accordingly, active surveillance, often managed by nonspecialists, is recommended to detect the few cases of lung cancer at an early stage, when cure rates are substantially higher (6, 7). It is important to minimize the harms of surveillance because patients with a benign nodule cannot directly benefit from follow-up.
One common harm during surveillance is the distress caused by a “near-cancer” diagnosis (8). For example, patients with false-positive mammograms frequently experience distress (9, 10). Identification of incidental pulmonary nodules can be distressing for many patients, but the magnitude, duration, and methods of ameliorating distress are not well understood (11). Among patients in lung cancer screening trials, distress seems to be relatively common after identification of a nodule, and it endures for some (12). In previous work, we found that many patients in routine care experience distress regarding their nodule that is sometimes severe (13–18). Higher communication quality was associated with decreased distress when the patient was first informed about the nodule (13), suggesting a possible mechanism to decrease distress.
As recommended by the National Institutes of Health and the American Thoracic Society (11, 19, 20), we sought to understand the longitudinal association between communication and distress to better assess the causal nature of this relationship. On the basis of previous work and the patient-centered communication model (21, 22), we hypothesized that high-quality communication would be associated with a smaller risk of distress.
We conducted a prospective, repeated-measures cohort study of patients with incidentally detected pulmonary nodules treated within the Veterans Affairs Portland Health Care System from June 2011 to November 2015. (Recruitment for this analysis was from February 2012 to December 2013.) Patients were eligible if they had newly reported, incidental (not screen-detected) nodules less than 3 cm in diameter and plans for follow-up with nonurgent computed tomography (CT). Exclusion criteria included residence in a skilled nursing facility, previous diagnosis of lung cancer, psychotic or cognitive disorder, terminal illness, or score less than 17 of 30 on the St. Louis University Mental Status Examination (23).
The clinician managing the nodule (usually a primary care provider) and mental health providers (if applicable) informed us that the patients had been notified about the finding and gave us permission to contact patients. (See the prior study for our enrollment flowchart [13]; of note, one participant was retroactively excluded after disclosing a previous lung cancer diagnosis.) This study was approved by the Veterans Affairs Portland Health Care System Institutional Review Board (approval number 2630), and all participants completed informed consent forms.
Participants were longitudinally surveyed after an incidental nodule was first detected with up to four follow-up research visits scheduled to occur shortly after a follow-up CT scan, if applicable. Participants were surveyed until the clinical period of surveillance ended, usually because the nodule was stable or had resolved on the basis of surveillance imaging. Two patients were ultimately diagnosed with lung cancer. Six participants had positron emitted tomographic scans (two of whom had lung cancer), one had a bronchoscopy without a biopsy, and two had surgical biopsies (one of whom had lung cancer). For participants who did not receive a surveillance CT scan over a 1-year interval, interviews occurred approximately 6 months after the preceding CT scan. Medical records were abstracted for the duration of nodule surveillance or for 2 years after the nodule was first detected, whichever occurred first. During the clinically defined surveillance period, one participant was lost to follow-up, and the remainder completed all visits.
Participants completed the Impact of Event Scale (IES) at each visit to measure symptoms of emotional distress related to the nodule in the prior 7 days. Researchers in several studies have reported that the IES has high internal consistency among patients with cancer (24). The IES has cutoff points for emotional distress severity (25) and has been judged to have high reliability and criterion measurement properties (24). For the primary analyses, we used a score of 8 or higher to indicate at least mild distress (25). In sensitivity analyses, we used the IES measured continuously.
We used the overall quality of participant-reported communication regarding the nodule as the primary exposure variable. At each visit, participants completed the Consultation Care Measure (CCM) (26), which is based on the patient-centered communication model (21, 22). The primary measure of the perception of communication was the statement, “The overall quality of communication with your provider (who is caring for your nodule) is excellent,” rated on a 7-point Likert scale from “very strongly agree” to “very strongly disagree.” For the primary analysis, we dichotomized this variable as “high quality” if participants indicated they agreed, strongly agreed, or very strongly agreed, and as “low quality” otherwise. Missing responses were not included in the primary statistical analyses.
The CCM also included communication domains regarding participant’s values and preferences regarding communication about the nodule, including partnership with the clinician, personal relationship with the clinician, health promotion, whether the clinician provided a positive and clear approach to the problem, and whether the clinician was interested in the participant’s life. Each question is coded with the same scale as the overall quality of communication. Scores for each domain were calculated in addition to a score for the entire instrument (26). Of note, the questions are categorized such that higher scores indicate lower-quality participant-reported communication with the clinician providing care for the nodule.
At each visit, participants were queried regarding their preferences for decision making using the Control Preferences Scale (27), a 5-point scale of the participant’s preferred and actual roles in decision making. For both actual and preferred roles, we categorized the responses into “patient-controlled” (responses 1 and 2), “shared” (response 3), and “clinician-controlled “(responses 4 and 5). We also assessed concordance between the preferred and actual roles. Participants whose preferred and actual roles were the same based on the three categories above were classified as concordant; all other combinations were discordant.
Participants self-reported demographics (sex, race and/or ethnicity, smoking status, education level, marital status, income) and comorbidities at baseline. We abstracted information from the electronic medical record regarding age, distance from home ZIP code to the radiology facility, nodule details obtained from the radiology report, service of the ordering provider, and whether a pulmonologist was involved in making follow-up recommendations (usually via an electronic consult without an in-person visit). We calculated the objective risk of lung cancer based on the Mayo model (28) because it is included in an online calculator that clinicians can access easily (http://www.chestx-ray.com/index.php/calculators/spn-calculator). We did not independently review the radiologic images.
We collected additional data at baseline regarding how the participant was informed about the study results, who informed the participant (including “research” because many participants did not recall being notified prior to our recruitment letter), and satisfaction with nodule communication processes as has been reported previously (13). Furthermore, we surveyed participants about their self-reported risk of lung cancer at each research visit.
We used generalized estimating equations (GEEs) clustered on the individual participant with a logit link and an exchangeable \lation matrix for the primary analysis of the association between overall communication quality and at least mild distress. We first performed univariable analyses for participant, clinician, and imaging characteristics associated with distress. On the basis of our previous work, we adjusted the final model for age, smoking status, income, and self-reported depression. We assessed self-reported risk of lung cancer as a confounder, but this variable did not change the point estimate or statistical significance of the primary association. Because a moderate number of participants did not feel that they had any communication with their clinicians regarding the nodule, we performed sensitivity analyses that included missing this information as a separate category. We also performed a sensitivity analysis using overall communication quality measured continuously.
Our prior work suggested that participants’ self-reported risk of lung cancer might modify the association between communication and distress. Thus, we stratified the cohort by ever versus never self-reporting a lung cancer risk of at least 30%. The P value for interaction was not statistically significant, so we report the results for the entire cohort.
In secondary analyses, we used GEEs, adjusted for the same variables as in the primary analysis, to measure the associations of individual communication domains in the CCM and on the Control Preferences Scale with at least mild distress. For the CCM domains, we report adjusted odds ratios (ORs) for every 1-point increase in the score, such that ORs greater than 1 indicate that lower-quality communication is associated with increased distress.
All tests were two tailed using robust standard errors to minimize assumptions about equal variance, and a P value less than 0.05 was considered statistically significant. We used Stata version 13 software for the analyses (StataCorp, College Station, TX).
Table 1 displays the baseline characteristics of the 121 participants, of 328 we approached, stratified between those who reported at least mild distress on at least one occasion and those who never experienced distress regarding their pulmonary nodule. Participants were surveyed, on average, 39 days (SD, 44 d) after their surveillance CT scan. All participants completed at least one distress measurement, and 69 (57%) had at least one visit at which they reported mild or greater distress because of their nodule. For the entire cohort, the average IES score was 12.9 (SD, 15.1) at baseline. Many participants did not feel a decision had been made regarding follow-up, so only 49% of the participants completed the baseline question regarding their actual role in the decision. For the entire cohort, the average participant-reported risk of lung cancer was higher than the average predicted risk, 10% (SD, 13%).
| Characteristic | Participants Who Were Never Distressed* (n = 52), n (%) or Mean ± SD | Participants Who Had at Least Mild Distress* at Least Once (n = 69), n (%) or Mean ± SD |
|---|---|---|
| Age, yr | 66.1 ± 10.2 | 62.6 ± 7.1 |
| Male sex | 48 (92.3%) | 65 (94.2%) |
| White race | 42 (84.0%) | 59 (89.4%) |
| Smoking status | ||
| Never | 10 (19.2%) | 17 (24.6%) |
| Former | 24 (46.2%) | 33 (47.8%) |
| Current | 18 (34.6%) | 19 (27.5%) |
| Socioeconomic characteristics | ||
| Education, undergraduate degree or higher | 32 (61.5%) | 45 (65.2%) |
| Currently married | 28 (53.9%) | 36 (52.9%) |
| Income $30,000/yr or more | 31 (63.3%) | 39 (60.9%) |
| Miles from home to radiology facility | 42.8 ± 51.3 | 63.7 ± 163.5 |
| Comorbidities (self-reported) | ||
| COPD | 5 (9.6%) | 25 (36.2%) |
| Depression | 14 (26.9%) | 46 (66.7%) |
| PTSD | 9 (17.3%) | 30 (43.5%) |
| Nodule/imaging characteristics | ||
| Baseline nodule size, mm | 5.6 ± 2.5 | 5.8 ± 2.9 |
| Clinician characteristics | ||
| Baseline imaging ordering clinician/location | ||
| Primary care provider | 20 (38.5%) | 28 (40.6%) |
| Emergency medicine | 21 (40.4%) | 24 (34.8%) |
| Pulmonary | 5 (9.6%) | 4 (5.8%) |
| Inpatient | 2 (3.9%) | 2 (2.9%) |
| Other | 4 (7.7%) | 11 (15.9%) |
| Pulmonologist involvement | ||
| Pulmonology ordered at least one follow-up scan | 9 (17.7%) | 10 (14.9%) |
| Pulmonology consulted at least one scan | 12 (23.1%) | 19 (27.5%) |
| Nodule information processes/satisfaction | ||
| How the participant was informed | ||
| Letter | 23 (46.0%) | 39 (56.5%) |
| Visit | 13 (26.0%) | 19 (27.5%) |
| Phone | 14 (28.0%) | 11 (15.9%) |
| Who informed the participant (self-report) | ||
| Primary care provider | 17 (32.7%) | 24 (34.8%) |
| Research | 18 (34.6%) | 26 (37.7%) |
| Other | 17 (32.7%) | 19 (27.5%) |
| How informed about what a nodule is | ||
| Not at all informed | 16 (31.4%) | 23 (33.3%) |
| Somewhat informed | 24 (47.1%) | 40 (58.0%) |
| Very informed | 9 (17.7%) | 5 (7.3%) |
| Unknown | 2 (3.9%) | 1 (1.5%) |
| How satisfied with clinician’s explanation | ||
| Not at all satisfied | 1 (1.9%) | 6 (8.7%) |
| Somewhat satisfied | 8 (15.4%) | 15 (21.7%) |
| Very satisfied | 15 (28.9%) | 17 (24.6%) |
| Unknown | 8 (15.4%) | 12 (17.4%) |
| Missing | 20 (38.5%) | 19 (27.5%) |
| Nodule care | ||
| Satisfied with care | 35 (77.8%) | 42 (62.7%) |
| Care could not be better | 14 (31.1%) | 10 (14.7%) |
| Risk of lung cancer | ||
| Participant-reported risk of lung cancer | ||
| ≤30% | 24 (46.2%) | 26 (37.7%) |
| >30% | 22 (42.3%) | 33 (47.8%) |
| Missing | 6 (11.5%) | 10 (14.5%) |
| Participant-reported risk of lung cancer as a percent | 35 ± 24 | 42 ± 27 |
| Calculated risk of lung cancer as a percent (Mayo model) | 10 ± 11 | 11 ± 13 |
| Overall communication processes | ||
| Low-quality overall communication | 8 (15.4%) | 19 (27.5%) |
| High-quality overall communication | 35 (67.3%) | 33 (47.8%) |
| Missing overall communication | 9 (17.3%) | 17 (24.6%) |
| Communication quality score (lower scores = higher quality; maximum score = 7) | 2.65 ± 1.59 | 3.15 ± 2.03 |
| Decision making | ||
| Preferred decision making | ||
| Patient controlled | 12 (24.0%) | 10 (15.2%) |
| Shared | 20 (40.0%) | 40 (60.6%) |
| Clinician controlled | 18 (36.0%) | 16 (24.2%) |
| Actual decision making | ||
| Patient controlled | 3 (12.5%) | 2 (5.7%) |
| Shared | 3 (12.5%) | 9 (25.7%) |
| Clinician controlled | 18 (75.0%) | 24 (68.6%) |
| Concordant decision making | 14 (58.3%) | 16 (45.7%) |
Table 2 shows the IES scores and self-reported risk of lung cancer, along with the percentage of participants who had at least mild distress and self-reported risk of lung cancer greater than or equal to 30% at each visit. Almost half (45%) of participants reported at least mild distress at baseline, whereas of those who were followed for 2 years, only 25% were distressed at the time of the last visit. Approximately 50% of participants reported that they had at least a 30% risk of lung cancer at baseline, and this percentage remained fairly constant at all visits.
| Visit 1 (n = 121) | Visit 2 (n = 118) | Visit 3 (n = 99) | Visit 4 (n = 62) | Visit 5 (n = 32) | |
|---|---|---|---|---|---|
| Distress* | |||||
| IES score, mean ± SD | 12.9 ± 15.1 | 10.9 ± 14.2 | 9.2 ± 15.4 | 6.2 ± 9.6 | 6.4 ± 9.8 |
| At least mild distress, n (%) | 48 (45.3%) | 46 (39.3%) | 31 (31.3%) | 15 (24.2%) | 8 (25%) |
| Self-reported risk of lung cancer | |||||
| Risk percent, mean ± SD | 39 ± 26 | 34 ± 27 | 36 ± 27 | 32 ± 26 | 35 ± 23 |
| >30% risk, n (%) | 55 (52.4%) | 50 (45.9%) | 44 (47.3%) | 26 (43.3%) | 15 (50%) |
Participants who reported high-quality communication had lower distress scores at the first two visits but fairly similar results afterward (Figure 1A). Similarly, participants with a self-reported risk of lung cancer less than 30% had lower distress scores at the first two visits (Figure 1B).
Figure 1. (A) Box plot of distress as measured using the Impact of Event Scale (IES), stratified by participant-reported overall quality of communication with the clinician providing care for the nodule at each visit. Reference line is shown at an IES score of 8, which indicates mild distress. Midline of box is the median, box represents the 25th–75th percentile, whiskers represent the greatest values excluding outliers, and dots indicate outliers. (B) Box plot of distress as measured using the IES, stratified by the participant-perceived risk of lung cancer at each visit. Reference line is shown at an IES score of 8, which indicates mild distress. Midline of box is the median, box is the 25th–75th percentile, whiskers represent the greatest values excluding outliers, and dots indicate outliers.
[More] [Minimize]Univariate GEE regression results are shown in Table 3. Objective measures of lung cancer risk, such as nodule size (per-1-mm increase OR, 0.99; 95% confidence interval [CI], 0.96–1.03; P = 0.76) and the Mayo calculated risk (per-decile increase OR, 1.05; 95% CI, 0.89–1.25; P = 0.55) were not associated with distress. However, every 10% increase in self-reported risk was associated with increased distress (OR, 1.21; 95% CI, 1.11–1.33; P < 0.001).
| Characteristic | Distress OR (95% CI)* | P Value |
|---|---|---|
| Age in yr | 0.96 (0.92–1.00) | 0.04 |
| Male sex | 1.55 (0.47–5.10) | 0.47 |
| Nonwhite race | 0.43 (0.16–1.12) | 0.08 |
| Smoking status | ||
| Never | Reference | |
| Former | 0.73 (0.35–1.52) | 0.41 |
| Current | 0.55 (0.25–1.25) | 0.15 |
| Socioeconomic characteristics | ||
| Education, undergraduate degree or higher | 1.11 (0.60–2.06) | 0.74 |
| Currently married | 0.94 (0.52–1.71) | 0.84 |
| Income $30,000/yr or more | 1.15 (0.61–2.16) | 0.66 |
| Comorbidities, self-reported | ||
| COPD | 2.47 (1.30–4.66) | 0.01 |
| Depression | 3.07 (1.94–4.86) | 0.00 |
| PTSD | 1.69 (0.91–3.14) | 0.09 |
| Nodule/imaging characteristic | ||
| Nodule size, mm | 0.99 (0.96–1.03) | 0.76 |
| Participant-reported risk of lung cancer | ||
| >30% | 2.06 (1.31–3.25) | <0.01 |
| Communication processes | ||
| High-quality overall communication | 0.39 (0.24–0.63) | <0.01 |
| Communication quality scores* | ||
| Communication: overall quality | 1.24 (1.08–1.43) | <0.01 |
| Communication: summary | 1.37 (1.15–1.63) | <0.01 |
| Communication: partnership | 1.36 (1.08–1.71) | 0.01 |
| Communication: relationship | 1.38 (1.17–1.63) | <0.01 |
| Communication: health | 1.04 (0.87–1.24) | 0.67 |
| Communication: positive | 1.45 (1.14–1.84) | <0.01 |
| Communication: interest | 1.43 (1.09–1.89) | 0.01 |
| Decision making | ||
| Preferred decision making | ||
| Patient controlled | Reference | |
| Shared | 1.37 (0.90–2.08) | 0.14 |
| Clinician controlled | 0.94 (0.55–1.62) | 0.84 |
| Actual decision making | ||
| Patient controlled | Reference | |
| Shared | 1.45 (0.44–4.85) | 0.54 |
| Clinician controlled | 1.11 (0.40–3.14) | 0.84 |
| Concordance of decision making | ||
| Discordant | Reference | |
| Concordance | 0.75 (0.41–1.34) | 0.33 |
The adjusted associations between communication domains and distress are reported in Table 4. High-quality overall communication was associated with a decreased odds of distress (adjusted OR, 0.42; 95% CI, 0.24–0.73; P = 0.002). Sensitivity analyses that included missing responses as a category, or when we analyzed overall communication quality measured continuously, did not appreciably change the direction or significance of this result. The analyses of the individual communication domains, with the exception of the health promotion domain, showed that lower-quality communication was associated with a higher odds of distress. Participants’ preferred and actual roles in decision making, as well as the concordance between the actual and shared roles, were not associated with distress.
| Communication | Distress Adjusted OR (95% CI)* | P Value |
|---|---|---|
| Quality of overall communication | ||
| Low-quality overall communication | Reference | |
| High-quality overall communication | 0.42 (0.24–0.73) | 0.002 |
| Communication quality scores† | ||
| Communication: summary | 1.36 (1.10–1.67) | 0.004 |
| Communication: partnership | 1.32 (1.03–1.69) | 0.029 |
| Communication: relationship | 1.28 (1.07–1.55) | 0.008 |
| Communication: health | 0.99 (0.81–1.20) | 0.901 |
| Communication: positive | 1.52 (1.13–2.05) | 0.006 |
| Communication: interest | 1.41 (1.01–1.98) | 0.044 |
| Decision making | ||
| Preferred decision making | ||
| Patient controlled | Reference | |
| Shared | 1.23 (0.79–1.91) | 0.352 |
| Clinician controlled | 0.96 (0.53–1.74) | 0.887 |
| Actual decision making | ||
| Patient controlled | Reference | |
| Shared | 1.70 (0.43–6.76) | 0.454 |
| Clinician controlled | 1.55 (0.46–5.29) | 0.483 |
| Concordance of decision making | ||
| Discordant | Reference | |
| Concordant | 0.79 (0.42–1.49) | 0.471 |
We found that over half of patients with incidental nodules experienced distress at least once after initial detection and during follow-up. For most patients, distress decreased over time, though one in four experienced sustained distress. Many patients continually overestimated their risk of lung cancer, echoing our qualitative findings that they did not receive new information (17). Overall high-quality communication was associated with a decreased risk of distress that was not confounded or modified by the self-reported risk of lung cancer. Finally, with the notable exception of shared decision making, several communication domains regarding values and preferences were associated with distress.
Qualitatively, we found that some patients experienced very high levels of distress about the nodule at baseline and that some remained distressed even 2 years after the nodule was first detected (14, 15, 17). Furthermore, in a recent cross-sectional study of 244 patients, we found that half had elevated distress scores on the IES up to 3 years after their nodule was identified (18). Likewise, some participants in lung cancer screening trials report increased distress and anxiety after identification of a nodule (12).
Among participants in the Dutch-Belgian Randomized Controlled Lung Cancer Screening Trial (the NELSON study), identification of an indeterminate finding (usually a nodule) on the baseline CT scan was associated with a significant increase in the IES (from 4.0 [95% CI, 2.8–5.3] to 7.8 [95% CI, 6.5–9.0]) 2 months later (29). By comparison, we found that the mean IES score when first assessed after nodule identification was 12.9 (SD, 15.1). We also found that while the mean IES score decreased over time, it was still greater at 2 years after follow-up than in the NELSON study (29).
Similarly to our results, Pittsburgh Lung Screening Study participants had, compared with baseline, worse state anxiety 6 months after a nodule was identified, but this anxiety almost returned to baseline 12 months afterward (30). Conversely, participants in the National Lung Screening Trial with false-positive results did not have elevated state anxiety compared with those with normal results (31). These differences in magnitude and duration have important ramifications for lung cancer screening. Some of the differences are likely due to different cohort characteristics (32, 33), but our results suggest that communication processes play a role in mitigating these harms.
Communication strategies are critical mediators of patient-centered outcomes for those with and at risk of cancer (19, 34, 35). Indeed, “[M]edical care is fundamentally a communicative enterprise in which clinicians [and] patients discuss a patient’s health, decide on the best therapeutic action, and make plans [on] those decisions” (36). Participants in screening trials receive a detailed presentation of risks and benefits prior to screening during the consent process (5). This communication process may explain why screening trial participants have milder distress than patients with incidental nodules.
It is important to understand which communication domains are associated with which outcomes (19, 36). Patient-centered communication models can be broadly classified into understanding the patient’s values and preferences; exchanging information; and sharing, to the extent the patient desires, decision making (21, 36). Our results showing significant associations in domains related to patients’ values and preferences with distress suggest that understanding these concerns is important in mitigating distress.
Interestingly, concordant decision making was not associated with distress in this study. Shared decision making has not been studied for patients undergoing lung cancer screening or who have incidental nodules. A pilot test of an aid to improve shared decision making regarding lung cancer screening, mostly among patients not eligible for screening, showed improved knowledge after use of the aid, but its impact on other patient-centered outcomes has not been evaluated (37). Among patients undergoing other cancer screening tests, shared–decision-making tools can improve knowledge, but it is not clear if they improve other outcomes (38). Although shared decision making is widely recommended (39–41) and a decision aid is now required for reimbursement of lung cancer screening (42), our findings indicate that the decision-making process should undergo continued evaluation.
We found that self-perceived risk of lung cancer, a marker of adequate information exchange, was associated with distress in univariable analyses, but it neither modified nor confounded the association between communication and distress. Currently available educational materials regarding pulmonary nodules are focused mostly on information exchange (43, 44). While they may help improve patients’ knowledge, future versions, as suggested by patient-centered communication models (21, 22), may need to include communication about values and preferences to decrease distress. Other techniques to improve communication strategies, such as individual clinician report cards regarding information exchange and patient-as-person domains (45), may be necessary. Our findings also suggest that decision aids, which are often focused on improving knowledge and facilitating shared decision making, may mitigate distress, but understanding patients’ values and preferences is equally—if not more—important (46).
The participants in our study were older veterans from one institution in the United States with small, incidentally detected nodules, so our results, particularly those that were not statistically significant, may not be generalizable. While several of our results have been echoed in other settings, further research is required to definitively identify and develop methods for improving distress. Also, our communication measures have been validated but are likely limited by ceiling effects.
Our results may underestimate the frequency and severity of distress and overestimate the quality of communication because we enrolled patients only after their clinician had given permission. As nodule surveillance recommendations change, patients may need different communication strategies, and these processes should be studied in parallel.
Many participants felt that they had limited communication regarding their nodule and could not answer many of the survey questions. Including some of the missing responses in sensitivity analyses did not substantially change our results, but it is unclear how changing communication processes might alter patient-centered outcomes for this group.
In what is, to our knowledge, the first quantitative study of patient-reported outcomes among patients with incidental pulmonary nodules evaluated throughout the follow-up process, distress was common, and many participants continued to substantially overestimate the risk of lung cancer. Communication processes that evaluate patients’ preferences and values were associated with decreased distress, but shared decision making was not. We suggest that clinicians caring for patients with nodules address individual patients’ values and preferences. Importantly, lung cancer screening processes focused on both improving knowledge and addressing patient’s values and preferences may be necessary to mitigate harm.
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This study was sponsored by a VA Health Services Research & Development career development award (CDA 09-025 and CDP 11-227) (C.G.S.). It was also supported by resources from the VA Portland Health Care System, Portland, Oregon; the VA Puget Sound Healthcare System, Seattle, Washington; and the Edith Nourse Rogers Memorial VA Hospital, Bedford, Massachusetts. The Department of Veterans Affairs did not have a role in the conduct of the study; in the collection, management, analysis, or interpretation of data; or in the preparation of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs or the U.S. government.
Author Contributions: All authors made substantial contributions to study conception and design, acquisition of data, or analysis and interpretation of data; contributed to drafting of the manuscript for important intellectual content; and provided final approval of the version to be published.
Author disclosures are available with the text of this article at www.atsjournals.org.
