Annals of the American Thoracic Society

Rationale: While surgical resection is recommended for most patients with early stage lung cancer according to the National Comprehensive Cancer Network guidelines, stereotactic body radiotherapy is increasingly being used. Provider–patient communication regarding the risks and benefits of each approach may be a modifiable factor leading to improved patient-centered outcomes.

Objectives: To qualitatively describe the experiences of patients undergoing either surgery or stereotactic body radiotherapy for early stage non–small cell lung cancer.

Methods: We qualitatively evaluated and used content analysis to describe the experiences of 13 patients with early clinical stage non–small cell lung cancer before undergoing treatment in three health care systems in the Pacific Northwest, with a focus on knowledge obtained, communication, and feelings of distress.

Measurements and Main Results: Although most participants reported rarely having been told about other options for treatment and could not readily recall many details about specific risks of recommended treatment, they were satisfied with their care. The patients paradoxically described clinicians as displaying caring and empathy despite not explicitly addressing their concerns and worries. We found that the communication domains that underlie shared decision making occurred infrequently, but that participants were still pleased with their role in the decision-making process. We did not find substantially different themes based on where the participant received care or the treatment selected.

Conclusions: Patients were satisfied with all aspects of their care, despite reporting little knowledge about risks or other treatment options, no direct elicitation of worries from providers, and a lack of shared decision making. While the development of effective communication strategies to address these gaps is warranted, their effect on patient-centered outcomes, such as distress and decisional conflict, is unclear.

Annually, approximately 18,000 people in the United States are diagnosed with early stage lung cancer (1), and this number is expected to increase with lung cancer screening implementation (2). Surgical resection via a lobectomy is the recommended therapy for most patients with stage I non–small cell lung cancer (NSCLC), based on results reported by the Lung Cancer Study Group and others (3, 4). In the past decade, sophisticated, computer-based treatment planning and delivery of external beam radiotherapy, including image guidance and intensity-modulated radiation therapy, has facilitated the widespread use of stereotactic body radiotherapy (SBRT). SBRT is reserved mostly for individuals who either decline or cannot tolerate surgery (5, 6).

The results of observational studies comparing SBRT with surgical resection among patients who can tolerate surgical resection have been mixed regarding long-term mortality, and they have been confounded by indication bias (79). An underpowered analysis of two randomized controlled trials of SBRT versus surgical resection in operable candidates showed similar short-term mortality (10). Only one study has directly compared patient-centered outcomes of these patients, and it showed that global health-related quality of life was higher among patients who received SBRT compared with surgery (11). Many organizations recommend a shared approach when making treatment decisions, especially given these uncertainties (1215). Shared decision making is an approach whereby clinicians inform patients about the risks and benefits of a treatment and patients explain to clinicians their values and preferences surrounding the decision. Both parties then come to an agreement (1618).

In addition to shared decision making, patient–provider communication is widely regarded as a key component of high-quality care that can improve patient-centered outcomes (1922). As such, there is currently little data regarding how clinicians or patients make decisions about treatment for early stage lung cancer, and there is no data regarding how patients prefer to make decisions in this setting. This prospective study is one of the first to qualitatively describe the experiences of patients undergoing either surgical or radiation treatment for early stage NSCLC.

We conducted a prospective, qualitative study to evaluate the experiences of patients with clinical stage I NSCLC before treatment, focusing on knowledge obtained, communication, and feelings of distress. We included patients treated at three medical centers in the Pacific Northwest: the VA Portland Health Care System, an academically affiliated hospital with outlying clinics; Oregon Health & Science University, an academic, quaternary health center; and Legacy Health, a private, nonprofit, tertiary health organization. Enrolled participants had suspected or confirmed stage I NSCLC and were being considered for curative treatment, and they had no history of lung cancer in the past 5 years. Pathologic confirmation of lung cancer was not an inclusion criterion (23). We excluded patients who scored less than 17 of 30 on the St. Louis University Mental Status Examination, had severe hearing impairment, were non–English speaking, lived in a skilled nursing facility, or were diagnosed with psychotic or cognitive disorders.

Each patient was referred by his or her treating clinician to the VA Portland Health Care System study coordinator. The joint internal review board of the VA Portland Health Care System and Oregon Health & Science University (number 10340), as well as the Legacy Institutional Review Board, approved this study. All participants completed written informed consent forms. We completed recruitment after 13 participants, as we had reached thematic saturation at each study site (24, 25).

A qualitative research analyst (S.E.G.) and/or a pulmonologist (C.G.S.) interviewed the participants, and the interviews were digitally recorded and transcribed. Participants self-reported demographic and smoking characteristics. Using standardized report forms, we gathered diagnosis and treatment information from the electronic medical record. We interviewed participants three times over the course of 1 year; however, only results from the baseline visit (before treatment) are reported.

Analysis

We performed directed content analysis (26), which uses existing theory to first identify key concepts as initial coding categories before defining them operationally. First, two of the authors (S.E.G. and C.G.S.) together reviewed three completed transcripts to develop a codebook. After discussion about the codebook, they then independently coded an additional three transcripts. Collaboratively, they refined the codebook again and reviewed, coded, and discussed discrepancies in the original transcripts. One of them (S.E.G.) independently reviewed and coded the remaining transcripts, with the other (C.G.S.) separately reviewing and coding three randomly selected transcripts to ensure consistency. We used the ATLAS.ti 7.1.7 platform (ATLAS.ti GmbH, Berlin, Germany) to organize and analyze the interviews. Each participant was identified by a randomly assigned letter not related to his or her name or treating hospital system, with a letter after a hyphen indicating if the participant was treated with SBRT (“R”) or surgery (“S”).

We used a patient-centered communication (PCC) theoretical model (27) to guide our understanding of the communication strategies, but the flexibility of the interview guide allowed other themes to emerge. The PCC domains include information exchange, patient as person (consideration of patient’s feelings, preferences, and values), sharing power and responsibility (shared decision making), therapeutic alliance (the need for patient and provider to be “on the same page”), and clinician as person (Figure 1) (21). We queried patients about their experiences with being diagnosed and choosing treatment for their early stage lung cancer. The interview guide included questions about perceived barriers to or facilitators of satisfactory care, the importance of benefits and risks of treatments, and feelings during the lung cancer evaluation process.

Table 1 shows self-reported characteristics of the 13 participants. Most participants had lung cancers incidentally found for problems such as cough or infection, although two were being monitored because of having previous extrathoracic malignancies. We did not find substantially different themes or responses based on at which medical center the participant received care. Six participants received SBRT and seven received surgery. Four of the seven participants who underwent surgery had had a biopsy attempt before treatment. Three of the six participants who received SBRT had had a biopsy attempt before treatment, but only one had cancer confirmed at the time of our interview. No participant reported seeing both surgical and radiation medicine specialists before treatment.

Table 1. Self-reported subject characteristics

Characteristicn (%) or Mean (SD)
Treatment location 
 VA Portland Health Care System5 (38%)
 Oregon Health & Science University5 (38%)
 Legacy Health System3 (23%)
Age, yr71 (10.1)
Male sex7 (54%)
Race/ethnicity 
 White11 (85%)
Smoking status 
 Current smoker0
 Former smoker11 (85%)
 Never smoker2 (15%)
Education 
 High school or less5 (38%)
Employment status 
 Retired, disabled, or currently not working11 (84%)
Income 
 $60,000 or more6 (46%)
Comorbidities (self-reported) 
 Asthma2 (15%)
 Chronic obstructive pulmonary disease1 (8%)
 Depression4 (31%)
 Post-traumatic stress disorder4 (31%)
Previous lung cancer diagnosis 
 Yes1 (8%)
Previous cancer (not lung) diagnosis 
 Yes5 (38%)
Cancer characteristics (from EMR) 
 Surgery, n = 7 
  Stage Ia, n (% of treatment type)3 (43%)
  Biopsy attempted before treatment4 (57%)
 SBRT, n = 6 
  Stage Ia, n (% of treatment type)3 (50%)
  Biopsy attempted before treatment3 (50%)
Average size of mass, cm (from EMR)2.4 (0.84)
Amount of time from discussion of treatment options with provider to research visit, d (from EMR)21 (16)
Presented at a multidisciplinary conference5 (38%)

Definition of abbreviation: EMR = electronic medical record.

Percentages are of nonmissing data of a total of 13 subjects.

Information Exchange
Knowledge and distress regarding uncertainty about diagnosis

Most participants who received SBRT noted that lacking biopsy confirmation of cancer was not distressful, while those about to undergo surgery indicated mild distress regarding this uncertainty (Table 2). Even if participants did report this as being bothersome, it was not reported as a source of major distress. Overall, participants described the feeling as “worrisome” or “puzzling” or that they “just didn’t like it.” Many reported that their clinicians conveyed that regardless of whether cancer was confirmed, the lesion would have to be treated. Participants recognized that they would receive treatment regardless of tissue confirmation.

Table 2. Information exchange

Participant IdentifierInformation Type
 Uncertainty
C-SSo, we don’t know whether it’s carcinoid or not…. [S]o, I guess we’ll know better when the pathologist has a look at what it is. But it certainly doesn’t seem to be a sort of lung cancer in the sort of virulent sense that it’s life-imperiling…. I’ve sort of reconciled that, “OK, it’s probably good that I’ll have it out.”
F-S[W]hen they do this surgery, they’re gonna remove all the lymph glands that are by the trachea and the bronchial tubes. You know, that seems a little radical to me when they don’t even know if it’s cancerous. It’d be kinda nice to know that before you start ripping all that stuff out.
G-RProbably Dr. [X] more than anybody has said … they can’t do the biopsy, but they look at these all the time and they just know what it looks like when it is cancer and everyone, every one of the doctors that I have talked to about this say, “It’s cancer.” So…, they didn’t leave me much room for argument on that, so I’ve pretty well accepted it.
  
 Risk and Benefit Knowledge
L-R[T]hey’ve all been very good at explaining. Even if I don’t remember, I feel better.
A-SThe word cure is.… I don’t know if there’s really a place in the cancer world for it. Because from what I’ve seen, a cell can always be left behind and decide to act at any given moment.
E-SThey gave me, uh, probabilities on each one, and it just went in one ear and out the other.
K-SI don’t know what to ask; I don’t know. No, I don’t have any [questions]. I’m just ready to get [treatment] done and over with.
J-SI like that word, doc! See, that cure word. That cure word makes all the difference in the world.
A-SThere are other things that could go wrong with the mechanics of the surgery, I would imagine. It is fairly invasive…. I kinda shut out when he was telling me about that. I mean, he was talking about going into my side and removing the rib and then replacing the rib after, and I realized when I left there that I really didn’t want to hear too much about that, for some reason.
  
 Lack of Knowledge
C-S[The provider] never really explained the advantages of having it out, I think, which I would like to hear as opposed to just leaving it there and monitoring if it starts to look funny…. How much can I do after? I don’t know how disabilitating that’s going to be. Really.
E-S[Re: written materials] Well, no, it wouldn’t [help]. It might have just started me staring at’em and then fantasizing, increasing the risks. But if it’s down to a minimum, then they’re doing the best they can. And that’s all I can expect of anybody is to do the best they can.
Knowledge regarding alternative treatments

Three participants (two receiving surgery and one receiving SBRT) felt completely uninformed about other possible treatment options besides the initial one that had been recommended. The rest reported that their clinicians had briefly mentioned other treatments, but the reasons behind recommending one treatment over another, as well as the risks and benefits of the other procedures, were not fully explained. Most felt that other treatments were not actual options, since they were not discussed in a personalized context. Despite limited information about other options, participants were satisfied with the information they received. Similar to many responders, participant B-R reported that not having that information “[doesn’t bother me] because I wouldn’t choose … the other [options] anyway. I just wouldn’t do it.”

About half said they were explicitly told they could delay treatment and pursue an active surveillance strategy as an option. But most participants felt that was not an acceptable alternative for them personally, so they did not perceive it as an option. Whether they mentioned active surveillance as an option or not, most participants reported that they preferred to have their cancer treated as early as possible. Some did contemplate “doing nothing” on their own but did not report discussing it with their provider.

The majority of patients who received surgery had heard about SBRT, but they were commonly informed that surgery was currently the best option for treatment of early stage NSCLC and thus little time was spent discussing radiation therapy. Similarly, most patients who received SBRT had heard about surgery, although this discussion was usually very brief and performed in the context of why the patients were not surgical candidates and therefore not much needed to be explained about surgery. All participants were convinced and satisfied that their particular treatment was the best option after these explanations and/or through their trust in their clinicians and did not want more information about the alternative option.

Knowledge regarding risks and benefits

At the time of the interviews, most SBRT participants still felt as if they did not know much about lung cancer treatments, but surgical participants indicated slightly more knowledge about their chosen treatment modality. Surgical patients reported doing more outside research and expressed more personal or family experience with cancer.

Almost universally, participants placed greater significance on the chance of a cure than on the side effects of either treatment. While some participants reported their clinicians did not discuss “cure” or survival rates at all, those who did could often recall a specific percentage that their cancer might be cured or completely removed. For example, participant G-R said, “[H]earing that there’s an 85% chance of curing this, I mean that was pretty good.”

Most participants could not recall many risks of their chosen treatment. All had heard about the risks, but none could recite them in the same way they could recite potential cure rates. Participant E-S explained, “[I knew I] had 55–60% chance of survival on the operation”; however, when queried about the risks, this participant responded, “Well they told me the risks of things, but like I said, it just went in one ear and out the other.” Some participants reported that they did not want to remember the risks or even to hear about them. They felt overwhelmed with all of the information or that this information was not useful, since it would not change their treatment plan. Participants were satisfied with not knowing the specific risks about their treatment and had few remaining questions.

Patient as Person
Distress

About one-third of participants expressed some form of distress (Table 3). They indicated that their distress was decreased by obtaining more information and garnering trust in their cancer team. A few participants expressed severe distress, such as being teary during the interview or describing the diagnosis as “devastating.” Another third said that they experienced both distress and calmness, with most distress occurring toward the beginning of workup and then diminishing with time. Concerns were mainly related to possible pain after surgery, needing to wait for the treatment, and making the “right” decision, and a few SBRT patients reported worry over being in a “tunnel” and lying still. There were no differences in responses between those undergoing SBRT and those having surgery.

Table 3. Patient as person

Participant IdentifierType of Communication
 Patient Management of Distress
A-SThe way I’ve dealt with all my previous cancers is through optimism and faith, and out of sight, out of mind.
D-RYou have to have a good outlook or things don’t turn out right, I don’t think. I think you can talk yourself into bad things as well as good things.
F-SI think because I do have faith, that puts me in a different number category than all these other people that are just statistically in the group.
J-SI really think that makes a big difference. That if you go in with a positive attitude, I think it makes a huge difference in your outcome.
  
 Provider Management of Distress
K-SI don’t think that he did [address my concerns and worries]! He just asked me if I had any questions after he told me what was going to happen with the surgery.
I-R[The providers] were very attentive…. They were sensitive to what might be bothering people and what they could do to make that easier for the person.
D-RI feel confident that [the provider] knows what he’s talking about and that they’re gonna take care of this…. It’s not like they just treat ya’ and send you home and forget about ya’.
G-RThey got to know me so well that they would give me a hug when they came in. And that’s valuable to me. Just the touch!
M-R[The providers] kept talking to me. And I was comfortable with them. I knew they knew what they were doing. That has a lot to do with it, if you are working with someone that you know is experienced, that you know cares. And I felt that they did.
Self-management of distress

Positive thinking and attitude were often mentioned as ways to cope with the cancer diagnosis and treatment. Participant A-S said, “I think the mind’s kind of a powerful tool in these things…. [I]f I laid on the floor every night crying and thinking about this tumor growing inside me? That might be a little more detrimental to my health than just … doing my best just to keep moving.” Similarly, participant J-S mentioned, “[I]t gets to that point where acceptance is like, what it is. Why worry about it? What would be the point?” The importance of faith arose, with participants stating that they were leaving outcomes up to God or fate. Participants expressed trust that the clinicians and staff would do their best, which made it easier to manage distress.

Clinician management of distress

Participants expressed less distress if clinicians were prepared for the visit, took time to explain things honestly, and listened. Participants reported that clinicians did not explicitly attend to concerns but did exhibit caring and sympathy. We asked how clinicians kept patients from being too apprehensive. Participant I-R stated, “[Clinicians are] very open to answering questions, and they answer the questions honestly. They don’t try to cover up something that might be bad. They tell you the way it is, … but they do it kindly and they tell you other kinds of ways to address it.” Trust came up again, especially when discussing the uncertainty surrounding a diagnosis or remaining anxieties about treatment. Participants expressed that direct inquiries into their feelings were not necessary. As participant G-R explained, “So, I know that those doctors really, genuinely care…. I could see that [the provider] genuinely cared about me and my outcome.” On the basis of participants’ previous experiences with the healthcare system, continuity with their clinicians, or with clinicians’ expressed knowledge and demeanor, participants viewed their clinicians as experts, which in turn increased their trust.

Shared Decision Making

We discussed the process of making treatment decisions, including thinking about the option of active surveillance (Table 4). Almost half of patients felt that they had only one option regarding their treatment and that therefore there was no decision to be made. Participant A-S said, “[A]ll the decisions were made for me. He didn’t give me any choices.” Three of these participants preferred to have clinicians make decisions for them. Participant L-R stated, “[W]hen [the provider] says something, it’s fine with me.” Only one explicitly expressed dissatisfaction with how the decision was made.

Table 4. Shared decision making

Participant IdentifierType of Communication
 Choice and Decision
A-SWell, in this case, I mean, all the decisions were made for me. [The provider] didn’t give me any choice.
K-SNo, they never gave me no options. They said, “Surgery.”
C-SInitially, I thought, “Oh, it’s been kind of taken out of my hands actually.” I’ve been sort of led into this … lung place where I can’t get out, except going to surgery. But I can kind of see how it happened. I mean, I would still like to know maybe if there are any other alternatives, but there doesn’t seem to be…. I know I didn’t entirely like the way [the decision] happened.
D-R[I say] “You tell me what to do and I’ll do it,” and they told me what they wanted me to do before and after the treatment.
G-RI mean, I believe they gave me their best information on what they thought should be done…. I definitely knew it was my choice. They were, like I say, excellent to give me what information they could, and then I weighed the pros and cons in my life and decided, “I can do this.” … I think the doctors allowed me the time and space to make that choice myself.
  
 Trust
D-R[The provider] put me on the best program for my breathing…, and every year he would make sure that I got my CT scans, and he went over them very carefully and always explained to me exactly what was there and what he saw and what his feelings was on it. He never just come in and brushed things aside and said, “Well, you’re OK, go on about your business.” He explained things and really gave me confidence that I knew that I was getting the best care that I could get from a doctor.
G-RSo, I know that those doctors really, genuinely care, and, like I say, even Dr. [X] who doesn’t know me anywhere near as well as these cardiologists do, I could see that he genuinely cared about me and my outcome. So, I have a trust that I put in them, just in even what they offer to me.
M-RAnd, of course, I told [the provider] I had to take her word for it because I didn’t know any better…. [S]he seemed to know what she’s talking about, and I have confidence in her.

Definition of abbreviation: CT = computed tomographic.

About half of participants felt that they did have a choice, and the decision was made completely by them. They made comments such as “[It was] totally my own decision” or “I made [the decision] on my own.” Shared decision making, as defined by participants as sharing responsibility with the clinician in making treatment decisions, occurred in only two cases (one SBRT, one surgery). It was common for participants to question the interviewers about how they should describe the decision-making process, since many did not feel that a decision was actually made. They indicated that it was not really a “process,” since there was rarely a discussion surrounding a decision. SBRT and surgical patients were evenly distributed in how they described how decisions were made, and, except for the one participant mentioned above, all reported being satisfied in how decisions were made.

Participant Recommendations

The most common recommendations were to use numbers and written materials, especially with tailored information, and to have providers identify reputable websites for patients to do their own research. The theme of preparation of the provider for office visits also came up very frequently. Other recommendations were showing patients their scans, reinforcing important points at each encounter, and the helpfulness of bringing a friend or family member to appointments. In addition, two participants suggested use of physical touch such as a hug from providers. Suggestions from participants are listed in Table 5, and related quotes are provided in Table 6.

Table 5. Participant recommendations regarding improving communication strategies

Recommendations for PatientsRecommendations for Providers
Record visits, or bring a friend or family memberIndividualize information
Seek opportunities to talk to or hear from others who have gone through the selected treatmentPrepare completely for each visit
Request physical touch (hand-holding, hugs) if desiredDon’t rush; explain things as thoroughly as each patient desires
Attend or begin a lung cancer support groupReinforce important points about treatment at each encounter
Prepare for visits (e.g., have questions ready, bring prior records)Show scans

Table 6. Recommendations and suggestions

Participant IdentifierSuggestions
A-SIf somebody could develop a software program or something like that …, that can put things in real terms, and the doctor could converse the same things and mix and match…. [T]hat might be helpful.
A-SI mean, how much can a patient that’s in that state of mind, and, granted, it varies, but how much can they really retain? So anything could be helpful I think. [Re: written materials]
D-RMy doctors all want to know how I’m doing with my treatment, is it working all right. They call back after I’ve been in to see them. For anything, they call and see how I’m doing, or they have one of their associates call and see how I’m doing.
F-SI could say to you, “You’ve got a 70% chance of surviving after 5 years.” You drive a Volvo or whatever you drive. But I don’t know if you drive drunk, I don’t know if you drive under the influence, I don’t know what your lifestyle is, you know? And it seems pretty arrogant for me to tell you that you have a 30% chance of dying after 5 years because you drive your car. [Re: personalization]
J-SThey seem to be on top of things…. I’ve had the best people explain to me in layman’s terms what I’m concerned about, whatever it is. And I pick up their vibes, if you will.
L-RI find that each time that I had to do a test, or a biopsy, and they talked about it before. That was each time, not at any one time.
L-ROh, my biggest problem was … I hadn’t seen any pictures! And so, finally, I think it was in Dr. [X]’s office. Well, [family member] said, “What are we doing? I haven’t seen anything! You’re just telling me that this is here and this is here.” So, he showed me the pictures.
C-SI think it’s very important to give people these sort of statistical things. Make it clear that not anything is 100% in this world, but that you know the kind of long-term outcome you can expect.

This study is one of the first to qualitatively describe the experiences of patients undergoing either surgical or radiation treatment for early stage NSCLC. Participants rarely received much information about other options for treatment and could not remember many specifics about their treatment. Clinicians demonstrated caring and empathy, although in general did not explicitly address patients’ concerns and worries. Notably, participants reported satisfaction with these aspects of communication. Participants also expressed the importance of trust in their clinician. We also found that true shared decision making occurred infrequently, but that participants remained pleased with their role in the decision-making process. Importantly, we did not find substantially different results between those who were undergoing surgery and those who were receiving SBRT.

In general, information exchange in isolation is not adequate for ensuring perceived high-quality communication (21, 28). Trust in particular predicts a patient’s opinion of the quality of communication and information (29). Trust enables patients to comfortably rely on clinicians’ determination that the information given is complete and possibly to be more willing to discuss personal concerns. Trust may also be a barrier if it causes patients to become acquiescent to clinicians’ suggestions (28). Our participants identified trust as an extremely important aspect of communication.

Most participants in our study could not recall much information but remained satisfied and indicated that clinicians did not elicit preferences and values when making the decision about treatment. Objective factors related to a cancer treatment decision included tumor characteristics and patient age and comorbidities. These differ from factors important to a patient’s decision, such as perceived efficacy, quality of life, and proximity to the end of life (30, 31). The acceptance of risks and expectations can also be starkly different (32, 33). Similarly to patients in other studies, participants felt that there was not really an option to discuss, or they left the decision in the hands of the provider (31). Satisfaction consequently may be due to factors not related to aspects of shared decision making. It is also possible that specialists assume that shared decision making has occurred before the patient’s visit with an upstream provider (such as a pulmonologist or other oncologist) or that they feel the referral to someone in their discipline indicates a well-informed preference for a particular treatment. Shared decision making is best used in a dynamic or changing treatment environment (30), which may apply in the arena of rapidly changing evidence for treatment of early stage lung cancer.

Participants undergoing SBRT seemed somewhat less distressed about the uncertainty of receiving a potentially harmful treatment associated with an unconfirmed diagnosis. They may have minimized the risks associated with radiation and/or perceived a confirmed diagnosis as less important than if they were undergoing an invasive procedure such as surgery. People may also ignore important differences between treatments due to fear of risk (31, 34). A substantial portion of participants reported experiencing distress during the cancer evaluation period. Among patients with cancer, distress is associated with both physical and psychosocial harm (35). Satisfaction with knowledge and/or increased knowledge are not associated with distress (3640), so high-quality communication strategies that employ all aspects of the PCC model, which may include discussion of faith and spirituality (41), may be necessary to decrease distress (21, 42).

Limitations

We included patients from three healthcare settings, but the results may not be generalizable to other settings or regions or to patients who report seeing both specialist types before treatment. Travel distance, clinic wait times, interactions with nonclinical staff, personality differences, and the role of friends or family may also influence participant recall and responses. We did not directly observe patient–clinician interactions, so our findings may not reflect actual practice. Our results are subject to participant recall bias, as well as moderator acceptance bias, whereby participants may respond with what they think the interviewer wants to hear (43). Finally, while our results offer provocative insights into potential communication strategies (Tables 5 and 6), tools and interventions should be tested before widespread dissemination.

Conclusions

In this study, which to our knowledge is the first to qualitatively described the experiences of patients undergoing either surgical or radiation treatment for early stage NSCLC, we noted that patients were extremely satisfied with all aspects of their lung cancer care despite reporting little knowledge about risks or other treatment options, a lack of actual shared decision making, and no recall of direct elicitation of their worries by providers. Trust, faith, and positive thinking played important roles in influencing distress and satisfaction. Patients desired personalized materials, evident clinician preparation for office visits, and easy-to-understand explanations, though it is unclear how much these interventions would improve patients’ already high levels of satisfaction. In further research, investigators should evaluate comprehensive strategies designed to increase tailored knowledge, identify approaches to mitigate worry, and promote shared decision making.

Writing Committee Members for the Early Stage Lung Cancer Comparative Effectiveness Research Consortium

VA Portland Health Care System: Mark E. Deffebach, M.D., and Mithran S. Sukumar, M.D.

Oregon Health & Science University: Paul H. Schipper, M.D.; Brandon H. Tieu, M.D.; Charles R. Thomas Jr., M.D.; Charlotte Kubicky, M.D., Ph.D.; and John Holland, M.D.

Legacy Health System: Andrew Y. Kee, M.D., and Andrew C. Tsen, M.D.

Providence Health & Services: John R. Handy Jr., M.D., Hon.D., and Steven Seung, MD, Ph.D., FACR

PeaceHealth Southwest Washington Medical Center: Michael A. Myers, M.D., and Dennis L. Febinger, M.D.

Tuality Healthcare: Timur Mitin, M.D., Ph.D., and Srinivas R. Mummadi, M.D., FCCP

Kaiser Permanente: Kelli D. Salter, M.D., Ph.D.; David G. Tse, M.D.; and Thomas D. Wynne, M.D.

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Correspondence and requests for reprints should be addressed to Sara E. Golden, M.P.H., Health Services Research & Development, VA Portland Health Care System, 3710 S.W. U.S. Veterans Hospital Road, R&D 66, Portland, OR 97239. E-mail:

*A complete list of members may be found before the beginning of the References.

This study and C.G.S. are supported by an award from the Radiation Oncology Institute (ROI2013-915, Radiation Therapy and Patient-Centered Outcomes among Lung Cancer Patients). The Radiation Oncology Institute did not have a role in the study conception, design, conduct, or analysis of the study, nor did they modify or approve this manuscript. The study was also supported by resources from the VA Portland Health Care System, Portland, Oregon. C.G.S. was also supported by a VA Health Services Research & Development Career Development Award (CDA 09-025) while the study was ongoing. 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 the study conception and design, acquisition of data, or analysis and interpretation of data; contributed to the drafting of the manuscript for important intellectual content; and provided final approval of the manuscript version to be published. S.E.G.: takes responsibility for the content of the manuscript, including the data and analysis.

Author disclosures are available with the text of this article at www.atsjournals.org.

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