Patients’ Perceptions at Diagnosis: Lung Cancer Discovery and Provider Relationships

Abstract

Background:

In the United States, most lung cancer cases are diagnosed at advanced stages, limiting treatment options and impacting survival. This study presents patients’ perspectives on the complexity of factors influencing a lung cancer diagnosis. Lung cancer awareness regarding risks, symptoms, smoking behaviors, family history, and environmental factors can lead to preventative and early detection measures.

Objective:

To explore lung cancer patient perspectives on lung cancer awareness within the context of an earlier study to understand sleep-wake disturbances in adults with NSCLC.

Methods:

A content analysis was used to analyze the original de-identified longitudinal interview data collected from 26 patients diagnosed with lung cancer.

Results:

Of the original 26 participants, 16 participants were included in this secondary data analysis. The participants were primarily females (n=10), Caucasians (n=13) with ages ranging between 49–83 years. Half of the sample was diagnosed with stage IV lung cancer and a majority of the sample was on chemotherapy (n=10). Two key themes were identified: the lung cancer discovery, and the patient-physician relationship.

Conclusions:

Unspecific initial symptoms, lack of knowledge and screening, as well as fear of the diagnosis delayed seeking medical care. Patient-physician relationships were hindered by smoking-associated stigma, inadequate sharing of information, and lack of coordinated, holistic care. Positive communication strategies are critical between patients and providers to meet patients’ specific needs.

Implications for Practice:

Educational interventions that enhance lung cancer awareness may improve prevention and screening actions, improve timely healthcare intervention, and reduce incidence and mortality.

Lung cancer is a serious problem in the United States. In 2021, lung cancer was expected to continue as the second most common cancer in both genders and the first common cause of cancer-related mortality, accounting for approximately 25% of all cancer-related deaths in the United States.¹ More than half of lung cancer cases are diagnosed at advanced stages, where the probability of treatment is low, and the five-year survival rate is only 5.2%.²

Understanding the contributing factors to the late presentation of lung cancer is important and complicated. For instance, even though lung cancer mortality can be significantly decreased by following screening guidelines, the lung cancer screening is underutilized with less than a 10% participation rate in the United States.³ The complexity of the control and early diagnosis of lung cancer includes socio-economic factors, lack of access to health care services, and fear of diagnosis and death.⁴ In addition, the vague nature of the initial lung cancer symptoms is another factor that might delay the diagnosis; it further impedes the recognition of the disease.^{4, 5} However, the current evidence regarding the influence of lung cancer symptoms on the diagnostic timeliness is still limited.⁵

Lung cancer stigma and self-blame associated with a lung cancer diagnosis can cause a refrain from seeking medical help, consequently delaying the diagnosis and receiving treatment, and also lead to worsening the psychological impact of the diagnosis.^{4, 6, 7} Moreover, this stigma seriously affects communication between patients and their health care providers.⁸

Investigating a patient-physician relationship is valuable in the lung cancer trajectory. Physicians perceive that caring for lung cancer patients is more challenging than treating patients with other cancer because they have poorer quality of life (QOL) and more symptom burden; this negative attitude could impact their patients’ relationship.⁹ Poor relationships affect the continuity of care and patients’ ability to decide on the kind of treatment received.¹⁰ On the other hand, good relationships are associated with less stigmatization among lung cancer patients.¹¹ Therefore, exploring the experience of lung cancer discovery and associated factors related to seeking medical care, and health provider relationships has particular importance.

This study aims to use a structured approach to make replicable and valid inferences¹² of lung cancer discovery, relationship with a health care provider, and associated lung cancer risks in individuals with newly diagnosed non-small cell lung cancer (NSCLC) from interviews of patients’ experiences from a study of sleep in lung cancer patients¹³. This study provides insight into patients’ awareness of lung cancer and the influence of the patient-physician relationship on the disease experience as experienced at a National Comprehensive Cancer Center (NCCC). This information is essential to improve lung cancer awareness, the patient-provider experience, and health outcomes.

Methods

This study is a secondary analysis of deidentified transcripts from an original longitudinal data set collected from 16 patients from a National Comprehensive Cancer Center (NCCC) site on the experience of sleep and lung cancer.^{14, 15} Participants were newly diagnosed with non-small cell lung cancer (NSCLC), had chosen treatment, and were able to perform self-care. Data were collected using open-ended interviews, which were digitally recorded, transcribed by a HIPPA certified transcription service. The interviewer verified the accuracy of the transcriptions, removed any identifying information and stored the data in a secure server. Institutional Review Board approval was obtained. Further details on the original study are described elsewhere.^{14, 16}

Participants for the secondary data analysis reported in this paper were participants solely from the NCCC reflecting current treatment standards and protocols. Interviews were conducted at baseline, following treatment one and two and at six months. Not all participants completed 3 interviews. Study attrition was attributed to change in disease status, increased symptoms, hospice care and death. Participants were asked to share their experiences about when they were first diagnosed with lung cancer and their sleep patterns before and after diagnosis.¹⁴ The texts from the data illustrated relationships among lung cancer and sleep practices, patterns, and shared meanings that formed the foundation for understanding these lived experiences over time by the participants.¹⁴ However, participants provided additional dialog describing their experiences with a lung cancer diagnosis, and provider interactions and these data were used for this secondary data analysis.

Data Analysis

Interviews were audiotaped and transcribed verbatim in the original study. All participant data were deidentified and assigned a participant number in the original study to protect human subjects. Transcript were checked for accuracy, uploaded into NVivo 12 Plus.¹⁷ The qualitative analysis for this study was done by two research team members (DS, and HM) coding all transcripts utilizing an inductive content analysis approach to identify concepts and themes resulting from the data. Based on an inductive approach, a systematic approach was utilized to identify specific objectives emerging from frequent, dominant, or significant themes evident in the data.¹² This approach allows the research team to condense textual data, summarizes narrative data, recognize themes and evident categories, and establishes a framework of the underlying processes apparent in the data to produce valid and reliable results.^{12, 18, 19}

Each researcher coded the data individually using line-by-line coding to identify main themes. Next, codes were developed and discussed by the research team as a group, and feedback was obtained about text interpretations. Codes were then grouped into categories representative of the identified themes. Any differences in the interpretations were resolved by consensus between the researchers. In this process, researchers maintain a high level of data accuracy and integrity by ensuring that the themes represent the actual data rather than the researchers’ interpretations.²⁰

Codes were clustered into descriptive categories of lung cancer discovery and patient-physician relationships. Two predominant themes emerged unrelated to sleep. Narrative data and associated themes were reviewed multiple times to summarize the themes and subthemes. A treemap was created to visualize the data and identify patterns and support the themes that emerged from the analysis. Using NVivo 12 Plus, a Hierarchy Chart was utilized to visualize the data in specific patterns that provide evidence on the identified themes (Figure 1). The Hierarchy Chart represents the themes in varying sizes of rectangles. The size reflects the number of coded items within a theme. More codes within a theme produce a larger rectangle (see Figure 1 for conceptual Hierarchy).²¹ Another visualization technique, Explore Diagrams, was used to represent the connection of predominant themes to study participants (see Figures 2 & 3).²¹

Figure 1: Hierarchy Chart-Coding References within Nodes.

Hierarchy of coding uses size (largest number of codes to smallest number of codes) to represent the number of codes per node.²⁰

Figure 2. Disease Discovery Themes.

This figure uses theme 1 “lung cancer discovery” and all of its connected coding to participants.²⁰

Figure 3. Patient-Physician Relationship.

This figure uses theme 2 “patient-physician relationship” and all of its connected coding to participants.²⁰

Additionally, according to the criteria of data saturation which were provided by Morse ²², our data reached the saturation because:1) the study sample is homogenous regarding the research topic (all are newly diagnosed NSCLC patients), 2) we used a purposive sample rather than a random sample, (3) researchers considered all variations in the data, and 4) our data provided information about the patient experience at the time of a lung cancer diagnosis and treatment.

Rigor was maintained by establishing several practices: 1) the research team members had new perspectives uninfluenced by the primary analysis, and conducted the secondary data analysis with uncoded transcripts, and 2) methods were used such as audit trails, and any amendments of the coding structure were discussed and verified by the team members to ensure correct and consistent interpretation throughout the analysis.²³

Sample and Setting

The original study was conducted in the northeastern region of the United States. Further details on the sample characteristics can be found in the study of Dickerson et al.^{14, 15} Of the original 26 participants of this study, 16 were patients at the NCCC and were deemed eligible for this secondary data analysis to reflect cutting-edge cancer treatments and protocols from nationally a recognized comprehensive cancer center. The participants were primarily females (n=10), Caucasian (n=13) with ages ranging between 49–83y (Mean 68, SD 9.2), with half of the sample diagnosed with stage IV lung cancer and a majority of the sample on chemotherapy (n=10). See the Table for sample characteristics.

Table.

Sample Demographics

Variable	$\overline{\mathrm{x}}$	SD	Range
Age (years)	68	9.2	49–83
Variable			n
Gender
Female			6
Male			10
Education
Less than high school			0
High school			10
College (2 years or 4 years)			3
Graduate school			2
Unknown			1
Race
Caucasian			13
African American			3
Stage of disease
IIA			1
IIIA			3
IIB			1
IIIB			3
IV			8
Type of treatment
Chemotherapy			10
Radiotherapy and			6
chemotherapy
Source of recruitment
Comprehensive cancer center			16
Smoking status
Quit smoking			11
Current smoker			3
Nonsmoker			1
Unknown			1
Years of smoking
10–30			2
31–50			8
51 or more			4
Unknown			1

Findings

Two key themes emerged from the data. Theme 1: Lung Cancer Discovery (Figure 2), includes two subthemes: initial symptoms, and perceived risks (smoking status and family history). Theme 2: Patient-Physician Relationship (Figure 3), includes three subthemes: pattern of communication, treating patients beyond their lung cancer diagnosis, and trust with health care providers.

Theme 1: Lung Cancer Discovery

Participants described their experiences during the initial disease diagnosis. These experiences included how their disease was discovered and the associated factors.

Initial Symptoms.

Most participants’ initial symptoms were unspecific and appeared similar to flu or respiratory infection. Some reflected, “I thought I had like a sinus infection or flu” (Participant 12) or “I thought I had the flu” (Participant 17) and “I thought the pain in the back was a pulled muscle” (Participant 3).

Unspecific initial symptoms that were similar to common ailments led to a delay in seeking medical advice. Participants in this study reported seeking medical help when their symptoms worsened, which may have contributed to a diagnosis at a more advanced stage of disease and thus they were unable to receive more effective treatment earlier.

One participant said “the cough didn’t stop, and it seemed to be aggravated where I was working” (Participant 23), and still another stated, “I delayed calling my doctor…because I’m one that doesn’t call him…you know… I only run when I’m crawling…” (Participant 12).

Additionally, initial symptoms’ un-specificity misled physicians to diagnose the disease, as a participant explained, “I went to the doctor, and they treated me for bacterial infection.” (Participant 18) Another participant told of their initial provider’s diagnosis, “they [the providers] said well, maybe you have a cold in your back” (Participant 5). Another related an incorrect diagnosis, “at first, he diagnosed me with esophageal cancer” (Participant 16).

The awareness of having risk factors of lung cancer was sometimes rooted in fear, and thus for Participant 25 this awareness prevented her from asking for screening, as she explained, “I didn’t do that because I was afraid of what they might find.” However, she wondered why her physician did not advise her to undergo a chest X-ray, as she explained, “And I’m surprised that none of the doctors who I saw, including particularly the one who a year ago diagnosed me with COPD, did not order a chest X-ray” (Participant 25).

Perceived Risks.

Participants also discussed their perceived risk factors for lung cancer such as, smoking history, having a history of cancer, family history, and how these factors gave meaning to their disease experience.

Smoking.

Participants were aware of a history of smoking as a risk factor of lung cancer, and they suspected that their smoking history and tobacco use were related to their lung cancer diagnosis, as one said, “I’m a smoker. And I already suspected it” (Participant 12). The thought of the risk was in the back of the mind of this participant who said, “not that everybody that smokes get lung cancer, but I was a smoker years ago” (Participant 22).

Some of the participants who were smokers blamed themselves for their diagnosis and considered lung cancer as partly their fault, as one said, “I feel this happened to me, and it is partly my fault that it happened” (Participant 6). Another one said, “It was my fault for smoking that long” (Participant 23).

Despite participants’ awareness of smoking as a risk factor for lung cancer, and the need to be screened for lung cancer, they did not participate in screening before diagnosis. For instance, Participant 23 was aware that smoking is a risk factor for lung cancer, but he did not do a regular checkup, saying “I smoked for 37 years so part…I had a chest x-ray oh I think about three years ago, three or four years ago I had a chest x-ray and showed nothing.” Another participant reflected that:

There were many opportune times for me to have had a chest X-ray in the past, not the least of which would’ve been for me to have asked for a chest X-ray because I am an ex-smoker. (Participant 25)

History of Cancer.

Participants expressed that even with a history of cancer, the diagnosis was not enough to encourage them to quit smoking.

The day they told me cancer, I didn’t smoke no more. And don’t ask me why, because I would go behind the barn, and smoke. I mean, that’s how I was before because I had a partial lung removed, and I still-- well I didn’t smoke for four months, but it only took one little upset, and I was back to smoking. (Participant 12)

However, with a past history of a cancer diagnosis, these participants were able to describe the seriousness of symptoms, as one related, “I knew something serious was wrong. And I did have cancer two years ago” (Participant 17). On the other hand, as one participant reflected on having cancer before lessened the psychological impact of the diagnosis:

I had leukemia seven years ago. So, I mean it was a letdown, but it’s an experience I’ve had before, so you just have to take it day-by-day and do the best you can (Participant 18).

Family History of Cancer.

One participant discussed a family member who had a diagnosis of lung cancer showing an understanding of the seriousness of the diagnosis and reflecting on her sister’s previous and continued smoking habits as contributing to the cancer:

I had a sister, and that passed away from lung cancer, and she, well she suffered up to the end. She was terminal… but she had smoked when she’s young. Let her smoke, go ahead (Participant 6).

In addition, participants’ belief in the available treatment modalities was a source to maintain a positive outlook despite witnessing relatives who died of cancer. Participant 16 reflected that:

Cancer has taken too many people in my family and it ain’t going to take me. But they didn’t have what was available to me (advanced treatment modalities). They weren’t able to take advantage of it, which is unfortunate but maybe that’s my luck, it’s good luck for me. (Participant 16)

Most of the participants experienced vague symptoms, which was a barrier in seeking treatment early. Despite their awareness of lung cancer risk factors, such as smoking, they did not undergo screening. Avoiding lung cancer screening was attributed to several factors including fear and stigma. Participants who had cancer in the past exhibited less negative feeling at the time of diagnosis with lung cancer. A history of having cancer or family history of cancer heightened some participants’ awareness of risks, warning symptoms, and how to navigate the disease process.

Theme 2. Relationship with Physician

Examining the relationship between participants and their health care providers revealed that proper communication with the provider was important to them. This communication included: provider availability to discuss topics related to the disease, treatment, expected treatment side effects, and managing the side effects that maintained provider respect. In addition, participants emphasized the need for providers to pay attention to their complaints or symptoms other than what they thought was related to their cancer. For participants, being satisfied with this relationship was essential to relieve their stress and help them manage their lung cancer diagnosis, treatment, and survivorship experience.

Pattern of Communication.

Patterns of communication were not always consistent. Stigma related to smoking as a contributing factor for lung cancer impacted the relationship between providers and some of the participants. Stigma was associated with participants’ perceptions related to feelings of guilt because of their smoking history “Whatever happened is my fault” (Participant 6). Also, participants may have delayed seeking medical help because they felt their provider may treat them with less respect due to a smoking history and its relationship with lung cancer. Participant 12 described feeling stigmatized especially when communicating with her healthcare provider, “I feel that they [providers] look down on me because I smoked…and I want to say to him, ‘I quit.’ You know, pat me on the back” (Participant 12).

Other participants complained about the delay in providing treatment, as Participant 16 reflected: “everything they’re [physicians] telling me that they were going to do, they don’t seem like they’re really going to do it now, you know, kind of frustrating.” Also, Participant 11 said, “it was two months before they did anything for me at [name of health care facility].” This delay was contributed to factors, such as extensive negotiation between health providers regarding the case “they kept having meetings and talking and going over my case.” And frequent rescheduling appointments:

They [care providers] scheduled me for surgery and the doctors told me that he postponed my surgery for-- to do a heart patient, for about a month, to the end of August; almost the end of August, yes, the end of August, the 31st of August from like the 7th of July to the 31st of August. So, then the Friday before the surgery he called and postponed me again for a heart patient. (Participant 11)

Participant 9 also reflected on delaying medical appointments and its impact on health condition:

In September when I was due to go to him he couldn’t see me but they asked me to keep my CAT Scan appointment, so I kept it, and I specifically said to them, if there’s something wrong will you call me? Oh yeah, well that was in September, in October I go to see him, never a phone call. Here I am. I mean, I just feel like it wouldn’t have been to this point if it had been taken care of before (Participant 9).

Participants highlighted the issue of insufficient information that was provided related to treatment, including scheduling appointments:

The one thing I don’t understand is, they want to do it with the radiation. They scheduled appointments for me, changed times on me and I’m always the last one to know, you know (Participant 16).

Treatment, as Participant 2 reflected;

“I don’t know how long he [physician] is going to have me on it [chemotherapy]. And he says until you can’t take it anymore. Does that mean I am going to die from it?”

And prescribed medicines:

They’re (care providers say) like take the pill. I know, yeah, take the pill before you’re nauseous. Like well, how do I know when I’m going to be nauseous though, you know, this is getting ridiculous (Participant 16).

Even though participants perceived that having information regarding treatment side effects is necessary and important, some participants reported that they did not receive this information consistently or did not receive it at all throughout treatment. Additionally, this knowledge deficiency caused a negative psychological impact, and it was a source of fear of the treatment they received. As one participant reflected on the lack of communication:

I don’t know if it [the symptom] was from the chemotherapy or the radiation or both, but I think that’s something you need to be prepared for. I wish they would have told me more about that. It kind of scared me (Participant 16).

Similarly, Participant 12 described the neuropathy she had because of chemotherapy as “weird” because she did not receive clear information on this kind of treatment’s side effects.

The communication gap between participants and physicians was apparent by the lack of direct contact with physicians and receiving information through others, such as nurses. Some participants in this study wanted to speak directly to their doctor to avoid miscommunication that might lead to delayed treatment and worsening health conditions. Participants wanted information about their current progress and test interpretations. Getting direct feedback from their providers was insufficient. Participant 9 described the miscommunication:

He [care provider] told me I was okay, but I didn’t see him at the time, I only saw the nurse, so then when I went to him this time he told me that there was scar tissue in my CAT scan at six months. I’m assuming everything was okay then and it wasn’t, so now that it’s back and I have a spot in the head too, that’s why we’re going through the chemo (Participant 9).

On the other hand, participants who were receiving direct and honest information about the disease and its treatment felt it contributed to developing a positive relationship with care providers. For example, Participant 3 said:

I like him [the physician] because he is straightforward, and he puts me at ease, I know, he [the doctor] explains to me because I’m a stage four, it is already in my veins, ok, I know there is no cure for it, but it can be controlled (Participant 3).

Treating Patients Beyond their Lung Cancer Diagnosis.

Some participants reported that oncology physicians were not sensitive to their complaints if not directly related to cancer, as one explained, “they are not listening to anything other than cancer” (Participant 12). Similarly, Participant 16 did not receive help from the physician and found that he had to manage his complaints by himself. The participant reflected:

Oh, are you taking your Compazine [provider asked] And I’m like, ‘Yeah, it doesn’t work. Can you recommend something else?’ Well, no. [provider answered] <laughs> Okay, well I’ll ride it out myself. They were going to leave it up to me. (Participant 16)

This was a source of frustration and left participants feeling segmented, not supported, and that they were expected to navigate care on their own, making them unwilling to contact their providers “no sense in calling them back” (Participant 12).

Trust with Health Care Providers.

Conflicting responses from multiple health care providers to participants regarding treatment management instilled distrust toward health care providers. Disrespectful comments about provider care to the participant were surprising and disconcerting, particularly in discussing whether they were receiving appropriate care. As participant 12 related:

The only thing I acquired was an itch, while it [chemotherapy] was being administered. And they don’t know what it was from. And the girl told me to call my doctor, my primary, and to get an anti-itch medicine. He got kind of aggravated, because I went to him today after the chemo. To get the script. And he looked at me, he says, I forgot what he said. Something about, you tell them they’re idiots. He says, you’re getting the Benadryl. He says that’s the same as the--“whatever it was, I had. It had started with an A, I can’t remember. But he said, it’s the same medicine, it’s the same medicine. And he says, the Benadryl didn’t make you itch, it’s got to be something in the chemo they’re giving you. So, I don’t know. <laughs> I don’t know who to trust, who to believe. I mean, any time somebody says something, it’s something different (Participant 12).

Poor communication between patients and their healthcare providers created a sense of insecurity and distrust in their understanding of how they were progressing with their cancer care. Participants felt the information was confusing as they knew they had a serious disease but were told they were doing well, as one explained, “every time I go to the doctor, they tell me I’m healthy. Why I don’t know where they get I’m healthy” (Participant 12). Another one said, “I do not care what the doctor says” (Participant 5).

However, Participants who were confident with the care provider were able to use this trust to defer their worry from their personal responsibility to a kind of acceptance of their situation. This was a form of stress relief and a source of tranquility, as reflected in comments Participant 16:

I don’t worry about dying. I don’t worry about living. I don’t worry about that kind of stuff because I put that in the doctor’s hands; that’s their job, you know. Don’t worry about it. You know, you have these people there that that’s their job to-- it’s what they’re trained to do is make you better and if all goes well, they will. (Participant 16)

Participant 23:

having an upbeat thought that [cancer experience] says it’s not me, it just happens, let’s deal with it and take care of it and trust the doctors and oncologists and radiologists who deal with this to know what to do and that’s all you can do. (Participant 23)

Participant 16:

I have all my faith in the world in the doctors at [hospital]. I mean I’ll let medical science take me as far as-- I’ll ride that wave forever.

Participant 6: “I was happy because they have confidence, in what they do here.”

This theme explored the nature of relationships between participants and their health providers. These relationships were influenced by smoking-associated stigma, inadequate sharing of medical information, delay in providing care, lack of contact, and lack of coordinated, holistic care. Participants who were engaged in their health care through sharing information expressed satisfaction with their health providers, making them more confident in their providers and able to cope with their illness.

Discussion

This study described the experiences of newly diagnosed NSCLC patients’ lung cancer discovery, and relationship with their health care provider, which gives insight into lung cancer risks due to lack of cancer awareness. The results of this study provide supporting evidence that there is a critical need for increasing lung cancer awareness for individuals and healthcare providers. Knowledge gaps in understanding lung cancer risk, symptoms of early disease, and benefits of seeking timely medical help underscore the need to increase lung cancer awareness.^{24, 25} The participants in this study talked about issues related to their lung cancer symptoms prior to or at diagnosis, perceived risks, and relationships with their health providers without being prompted during the original study interviews focused on sleep. In the current literature, lack of lung cancer facts, lung cancer stigma, smoking status, and distrust may influence the timing of medical help-seeking behavior of individuals experiencing possible lung cancer symptoms.^{24, 26, 27} In the current study similar issues of stigma related to tobacco use (current or historical), delay in seeking medical help, were mentioned by participants in our study. Furthermore, once seeking help, some participants experienced distrust in the provider relationship while others put their total trust in the provider expertise.

Patients’ perceptions of risk and misunderstanding symptoms of lung cancer contributed to delays in seeking medical help. Similar to factors reported by Cassim and colleagues,²⁸ several of our study participants and their providers did not appreciate the participant’s risk for lung cancer nor recognize symptoms associated with lung cancer. A systematic review conducted by Cassim and colleagues²⁸ grouped barriers to seeking medical help for lung cancer care into three categories including healthcare provider and system, patient, and disease factors. Patients in the study often did not recognize their risks, minimized or misinterpreted symptoms forgoing seeking healthcare provider advice and managing symptoms on their own.²⁸ Our study and Cassim et al²⁸ found quality of the relationship between provider and patient affected quality of care. Poor communication resulted in providers delay in considering patient concerns, and patients developing a lack of trust in providers, consequently delaying patients seeking critical information and timely healthcare advice.

Stigma related to smoking behaviors were reported in the literature to be a factor in delayed seeking medical help for many individuals diagnosed with lung cancer and also experienced by the participants in our study. A scoping review conducted by Webb and colleagues²⁷ found individuals diagnosed with lung cancer reported feeling stigmatized related to social/cultural opinion about smokers deserving of negative health consequences caused by smoking such as lung cancer.²⁷ Participants in the study were also inclined to associate stigma with feelings of self-blame, shame, anger, regret, guilt, and blame and discrimination from others. These feelings contributed to the timeliness of seeking medical help as well as influencing patient-provider relationships.²⁷ According to Hamann and associates,²⁹ previous work identified three key elements of lung cancer stigma from the patients perspective. These included 1) patient perceived stigma (how the patient thinks others think and say); 2) patient internalized stigma (patient self-imposes blame and guilt); and patient constrained disclosure (patient limits discussion of lung cancer with others).²⁹ These feelings and behaviors can lead to serious consequences that impact screening for early detection and seeking health provider help in assessing possible presenting symptoms. Limiting their engagement and discussion with others can delay critical cancer treatment and survivorship care.²⁹ Stigma was part of the participant reported experience, but in this study the vagueness of symptoms and misdiagnosis were also part of the delay in being treated and the advanced staging when diagnosed. This combination of factors discussed by the patients adds to the literature an understanding of the problem with cancer awareness. Also, more recently more non-smoking patients are diagnosed with lung cancer thus the problem of understanding symptoms is greater for both patients and providers.³⁰ More epidemiological studies on nonsmoking lung cancer may improve the knowledge for this lung cancer population.

Provider knowledge, attitudes, and practice patterns contribute towards initiating a conversation about lung cancer risks, tobacco cessation programs, and recommending lung cancer screening with their patients.^{24, 31–34} Participants in this study commented about health provider communication, fragmented care, and level of trust when information was inconsistent or not provided during their lung cancer care. Several participants felt frustrated and unsure of the level of care they received. Information communicated regarding their treatment was confusing, inconsistent and disjointed. Lung cancer most often requires a complex strategy to care planning. Patients and their caregivers need to be constantly updated with clear and concise information tailored to the specific needs of the patient.³⁵ Frequent communication is critical especially due to the patient’s current status, options for care, consequences to therapy, and development of new therapeutic treatments. Healthcare providers must understand the specific needs of their patients, and also have the communication skills to support patients as they move along their disease trajectory.³⁵

Limitations

Limitations of the study were that participants were recruited from one cancer center, and a greater number of white participants in the sample: therefore, lacking racial/ethnic diversity. The lack of diversity in our sample is consistent with enrollment into clinical research nationally. ^{36, 37} Currently, there is an emphasis to include strategies in study design for increasing diversity in participation, such as use of race, ethnic, and culturally matched health care provider and research staff representative of the community they serve, and community outreach programs.³⁸ This study was a secondary data analysis of existing data from a previous study focused on sleep, and was not the main objective of the interviews; therefore, the data may not be as in-depth and rich as if it had been included in the original aims of the study.

Implications

This study presents the complexity of factors influencing lung cancer trajectory and the need for educational interventions that address these factors, including providing awareness of cancer screening, recognizing initial symptoms, and seeking timely medical care. Nurses are well positioned in a multitude of healthcare practice settings and roles to make positive and sustainable change in addressing lung cancer awareness, prevention, and screening practice. These issues include but are not limited to race, ethnicity, socioeconomic status, and geographic location contributing to an individual’s ability to achieve ideal health by receiving evidence-based informed lung cancer education, optimal patient/provider education, and access to community appropriate health services. This study also addresses the importance of developing positive relationships between patients and their providers. Thus, implementing good communication strategies among the health care team before and after diagnosis (providers, specialists, nursing, support staff) that enable care providers to meet their patients’ specific needs, provide clear information on the disease and its treatment, and provide patient-centered care is a necessity.

Conclusion

Lung cancer discovery is influenced by factors that lead to delay in seeking medical care. These factors include unspecific initial symptoms, lack of knowledge, lack of screening, and fear of the diagnosis due to past smoking behaviors. Furthermore, participants addressed their relationships with physicians when talking about their experience with the disease. Patients describe their feelings of blame for their past smoking behaviors which hinders their communication with providers. Most importantly patients did not connect their symptoms to a potential lung cancer diagnosis thus initial provider communication was not focused on lung cancer.