Engaging At-Risk Rural Residents in Secondary Lung Cancer Prevention

Abstract

Introduction:

Rural residents are at elevated risk for lung cancer and related mortality, yet limited research has explored their perspectives on cancer risk or prevention options, including tobacco treatment and lung cancer screening with low-dose computed tomography (LDCT). This qualitative study examined attitudes and beliefs among rural adults who reported either current or former tobacco use, as well as disengagement from the health care system.

Methods:

We conducted 6 focus groups with rural Maine residents at risk for lung cancer based on age and smoking history (n = 50). Semistructured interviews explored participants’ knowledge, perceptions, and attitudes regarding lung cancer risk, LDCT screening, and patient provider relationships. Inductive qualitative analysis of interview transcripts was conducted to identify key themes.

Results:

Participants were cognizant of their elevated lung cancer risk, yet few were aware of LDCT screening. When informed about LDCT, most participants indicated a willingness to undergo screening, although a substantial minority indicated reluctance related to fear and fatalism. Participants generally expressed the belief that relationships with a primary care provider could support their health and identified several provider factors that influence these relationships, including attention and time for patient concerns; respect and non-judgmental, nonstigmatizing attitudes; treating patients as individuals; and provider empathy and emotional support.

Conclusions:

Rural residents at risk for lung cancer report limited knowledge and substantial ambivalence regarding LDCT screening, but identify provider behaviors that may promote patient-provider relationships and greater engagement with their health. More research is needed to confirm these findings and understand how to help rural residents and healthcare providers work together to reduce lung cancer risk.

Intoduction

Lung cancer is the leading cause of cancer mortality in the United States (US)¹ and rural residents experience lung cancer rates 18% to 20% higher than those found among urban populations.² Rural residents are also more likely to smoke than their urban peers (a gap ie, widening),³ and face structural health care barriers including provider shortages⁴ and higher uninsured rates.⁵ Rural lung cancer patients are diagnosed at a later stage and die at higher rates compared with urban patients.^6,7

Reducing rural lung cancer disparities requires both primary and secondary prevention, the latter of which includes tobacco treatment and lung cancer screening. Yet studies suggest rural residents may be less likely to receive tobacco cessation counseling from health care providers,⁸ perhaps related to the difficulty of integrating tobacco treatment within busy rural primary care workflows. This possibility is supported by a qualitative study of rural residents with active tobacco use, which suggested that health care providers lack sufficient time for tobacco education and cessation counseling.⁹

The US Preventive Services Task Force (USPSTF) recommends annual screening for lung cancer with low-dose computed tomography (LDCT) in adults aged 50 to 80 years who have a 20 pack-year smoking history and currently smoke or have quit within the past 15 years.¹⁰ The current recommendations reflect recently adopted revisions to the prior USPSTF guidelines based on an updated systematic review of the empirical evidence and new modeling studies. The updated guidelines increase the screening-eligible population by an estimated 6.5 million individuals compared with the previous guidelines.¹¹ In a national, online survey of LDCT-eligible individuals, over 3 quarters expressed willingness to undergo screening.¹² However, rural residents may not exhibit the same openness to LDCT screening. One qualitative study suggested that rural Appalachians avoided cancer screening because of pessimism about cancer treatment options and a preference not to know their cancer status.¹³ A recent 12-site study of cancer centers across the U.S. found that compared with their urban counterparts, rural residents exhibited higher levels of cancer-related fatalism and information overload.¹⁴ Rural health and lung cancer experts have called for research to identify the factors that may impede or facilitate rural residents’ participation in LDCT screening, including psychosocial and provider-level factors.¹⁵

Patients’ trust in healthcare providers, for example, influences whether they are willing to reveal health-related information, agree to medical recommendations, and adhere to treatment plans.¹⁶ Preliminary evidence suggests that patient trust is related to use of cancer care in rural contexts. Qualitative investigations conducted in rural Appalachia¹³ and Alabama¹⁷ have indicated that fear and distrust of doctors are common and these attitudes discourage community members from pursuing routine care and cancer screening.^13,17 Trust and related attitudes may affect providers’ efforts to address lung cancer risk factors as well.

The goal of this qualitative study was to explore the potential influence of these and other psychosocial and provider-level factors on rural residents’ participation in tobacco treatment and LDCT screening. We conducted focus groups with adults from rural Maine (a state that, by some estimates, is the oldest and most rural in the country)¹⁸ who were at elevated risk for lung cancer due to their age and smoking status, and identified themselves as disengaged from the health care system. We explored participants’ knowledge, perceptions, and attitudes regarding various factors related to lung cancer prevention, including: personal lung cancer risk; tobacco use and treatment; LDCT screening; and factors influencing their engagement with health care providers and lung cancer prevention services.

Methods

A qualitative study was conducted utilizing focus group interviews with 50 rural adults at potential risk for lung cancer based on smoking history and age. The study was approved by the University Institutional Review Board (IRB).

To obtain a study population of rural community residents both at increased lung cancer risk and disengaged from the healthcare system, we used purposive sampling¹⁹ to recruit participants from 3 rural Maine counties with high adult smoking and lung cancer mortality rates. Eligibility criteria included: age 40 or older; active tobacco use or a history of prior tobacco use and had quit within the past 15 years; current or prior smoking of least 1 cigarette per day; and infrequent contact with doctors. Although lung cancer risk is highest among adults aged 50 and older, we recruited younger patients in order to explore options for earlier interventions to reduce lung cancer risk. Because we experienced low registration in one community (n = 4) we allowed 2 individuals younger than 40 to participate.

We worked with community organizations to recruit participants and advertised through social media, print notices in newspapers, radio announcements, and in-person announcements at community events. Partner organizations posted recruitment flyers at their sites and other locations in or near their communities (eg, local food pantries, bingo/beano game locations, laundromats). Participants received a $40 grocery gift card as compensation for their time and a $10 gas station gift card for travel reimbursement.

Table 1 includes descriptive information on the 50 participants. Their characteristics reflected the generally lower socioeconomic status of residents of rural Maine; nearly 75% had incomes below $25 000 per year and 62% had educations of high school level or less. The percentage of participants who were members of a minoritized racial or ethnic group was slightly higher than the overall rate in Maine (8% vs 6% statewide). Two-thirds (33) reported that they currently smoke and, of those, 79% had smoked for at least 30 years. Participants had mixed experience with recent primary care use. About half (48%) reported having a physical exam within the past year while another quarter (26%) had an exam in the past 1 to 3 years. One quarter (26%) stated that they hadn’t had an exam in more than 3 years.

Table 1.

Demographic and Smoking Characteristics of Focus Group Participants.

Characteristic	Percent of participants (%)
Gender (n = 50)
Female	34 (68.0)
Male	16 (32.0)
Age (n = 45)
<40	2 (4.4)
40-49	10 (22.2)
50-59	15 (33.3)
60-64	10 (22.2)
65+	8 (17.8)
Race (n = 50)
White	46 (92.0)
Native American	2 (4.0)
Other	2 (4.0)
Highest level of education (n = 50)
Less than high school	5 (10.0)
High school/GED	26 (52.0)
Some college	8 (16.0)
Trade/technical/vocational training	3 (6.0)
College graduate	8 (16.0)
Household income (n = 48)
<$15 000	21 (43.8)
$15 000-$25 000	14 (29.2)
$25 000-$50 000	9 (18.8)
>$50 000	4 (8.3)
Time since last exam (n = 46)
Less than 1 year	22 (47.8)
1-3 years	12 (26.1)
3-5 years	8 (17.4)
5+ years	4 (8.6)
Years smoking—current smokers (n = 29)
10-19	2 (6.9)
20-29	4 (13.8)
30-39	8 (27.6)
40-49	10 (34.5)
50+	5 (17.2)
Cigarettes per day—current smokers (n = 33)
0-9	4 (12.1)
10-19	6 (18.2)
20-29	12 (36.4)
30-39	6 (18.2)
40+	5 (15.1)
Years smoking—former smokers (n = 17)
0-9	1 (5.9)
10-19	5 (29.4)
20-29	5 (29.4)
30-39	4 (23.5)
40+	2 (11.8)
Cigarettes per day—former smokers (n = 17)
0-9	3 (17.6)
10-19	1 (5.9)
20-29	5 (29.4)
30-39	6 (35.3)
40+	2 (11.8)
Years since quitting (n = 17)
Less than 15 years	15 (88.2)

Percents may not total 100% due to rounding.

We developed a semi-structured focus group interview guide with open-ended questions and optional closed-ended probes to explore various topics including lung cancer risk, LDCT screening, patient-provider relationships, and tobacco treatment conversations with providers. To enhance interpretive validity,²⁰ iterative questions and probes were used to ensure the meaning of participants’ statements were accurately recorded. Participants were given opportunities to elaborate on topics or introduce new themes. An experienced facilitator led each 90-min focus group. Informed consent was obtained from all participants before focus groups began. Focus groups were recorded, transcribed verbatim, and anonymized by a professional transcription service.

For analysis, we used software-assisted coding and qualitative content analysis and thematic analysis²¹ to develop 2 levels of structural codes. First-level structural codes mirrored our overarching research topics—for example, perception of lung cancer risk and relationship with providers. Second-level structural codes captured concepts nested within the first-level codes. Using NVivo^® (QSR International) qualitative analysis software, researcher pairs coded all transcripts, meeting periodically to compare results and resolve inconsistencies by consensus. The entire study team then conducted further analysis of the structural codes to identify broad themes and sub-themes within and across transcripts, which were refined through further discussion and feedback.

Results

The main findings focused on participants’ perceptions of their lung cancer risk; receptiveness to LDCT screening; the role of patient-provider relationships in health promoting behaviors; and factors affecting the quality of these relationships.

Perceptions of Personal Lung Cancer Risk

Participants acknowledged that their smoking histories placed them at elevated risk for adverse health consequences, particularly lung cancer. As one man reflected: “I smoke cigarettes, so I kind of just feel it’s self-inflicted. . .So if I get diagnosed with cancer, I don’t think I would be shocked.” A participant whose aunt died of smoking-related lung cancer described her daily experience: “I wake up in the morning and light my cigarette and think about [lung cancer]. I’m living in my aunt’s camper right now, so I’m surrounded by her.” Another person described a similar sense of foreboding: “I have a doctor’s appointment for my yearly physical. . .I’m really frightened. . .Because of smoking. . .I’m afraid I’m going to be diagnosed with lung cancer tomorrow.” Some people with a long-term smoking history feared that even if they quit smoking immediately, it was already too late for them to avoid a lung cancer diagnosis: “I’ve smoked since I was 14 years old. What’s the chances of me quitting and not dying of cancer anyway? . . . Kind of like it’s inevitable. I don’t know. It’s overwhelming.”

Views on Low-Dose Computed Tomography (LDCT)

Awareness of LDCT screening was low among focus group participants. Only 6 of 50 participants said they had heard of the procedure. When asked about their interest in lung cancer screening, participants commonly expressed concern about its costs. Some participants reported strong, unequivocal interest in the procedure, if they had the financial means. For example, one person said, “Why wouldn’t anybody get the screening if they could? It’s a given as far as I’m concerned.” Some noted they would value the peace of mind that would follow a negative screen: “That would be great to feel like you have a reprieve, if you don’t have [lung cancer].” Others felt screening was desirable because it could result in earlier detection, which might in turn lead to potentially helpful treatment: “I would like to know. There are advances in medicine, if you can afford it and have insurance, there are things that are possible with lung cancer today that weren’t ten years ago.”

Yet not all participants were as receptive to the idea of screening. Generally, those who felt they would decline LDCT indicated they feared receiving distressing news. One woman commented, “The thought of just getting screened makes my heart race. I don’t know if I want to know what’s happening.” Importantly, this sentiment seemed to be combined with a sense of fatalism for this participant: “At this point I feel kind of hopeless. Like do I really want to know at this point?” A small number of participants expressed the additional concern that the procedure itself might be dangerous: “it’s not good to have too many scans.”

Views on the Importance of Patient-Provider Relationships

In discussing their engagement with the health care system, several participants expressed the view that an ongoing, consistent relationship with a health care provider is essential for maintaining good health. Multiple participants reported that providers who knew their patients well were more likely to care about them as individuals: “I think the personal relationship with the doctor makes it seem when you go in there that you’re not there just as a number or a dollar bill.” Participants also saw consistency in patient-provider relationships as promoting patient trust: “You’re probably more willing to share things if you’re close to your provider. If it’s somebody you’ve never met before. . .you’re less likely to share.” In terms of smoking cessation, most participants viewed internal motivation as the primary criterion for success, but indicated that providers could have a positive (or negative) impact on their motivation. Some participants reported that pressure to quit smoking before they were ready backfired, making them feel determination to continue smoking. For example, one woman noted she found it “completely unhelpful when [her] doctor was ‘naggy’” about smoking cessation, and that this approach “almost makes you want to smoke more.”

Views on Factors Affecting Patient-Provider Relationships

Participants identified various provider characteristics that enhanced patient-provider relationships: (1) attention and time for patient concerns; (2) respect and non-judgmental attitude; (3) treating patients as individuals; and (4) provider empathy and emotional support. Examples of each are presented in Table 2 and discussed below.

Table 2.

Examples of Perceived Provider Behavior That Affect Engagement.

Theme	Relationship-supporting	Relationship-impeding
Attention and time	She has never cut me off in a visit.	[He] just sat at his computer and filled in the blanks with barely making eye contact with me. It felt ridiculous.
Respect	He respects my opinion and I respect what he’s doing.	If he did judge me when it came to smoking, I’d still smoke. . .I’d just probably lie to him.
Treating patients as individuals	I would prioritize a 5-min, “You’re smoking. How do you feel about that?”. . .	Just those pat answers won’t work.
Empathy and understanding	She was so understanding and cared. We hugged each other when I left.	They don’t have any feelings almost. Some of them. It feels like here it is, take it or leave it.

Participants valued providers who demonstrated sustained attention to their concerns. For example, a woman observed she felt better able to work with doctors “if they really listen to you when you’re not feeling well, and not just matter-of-factly slot you.” Similarly, a man attributed his positive relationship with his doctor to the fact that “she has never cut me off in a visit” and that “she hits on every aspect of my life” during appointments. Conversely, participants reacted negatively to signs of provider inattention or dismissiveness: “The doctor literally just sat at his computer and filled in the blanks with barely making eye contact with me. It felt ridiculous.” Participants described withdrawing from relationships in which they felt unheard: “I’ve been through quite a few doctors so far because I can’t find one to take me seriously or listen to what I have to say,” and “She doesn’t remember anything about me or any of my health issues, so I just stopped going.”

Participants likewise indicated they preferred to work with providers who approached their relationships with patients as collaborative partnerships and demonstrated respect for them. For example, a man expressed satisfaction with his current doctor because “he respects my opinion and I respect what he’s doing,” and a woman noted with approval that her doctor “knows that I know my body.” In contrast, patients expressed displeasure with attitudes they perceived as paternalistic. One noted, “Nobody likes being talked down to,” while another observed, “It’s important to me to be on the same wavelength as the doctor, not having them lecture me about things that I think I understand.”

Participants were particularly sensitive to providers’ respect and avoidance of stigmatizing attitudes and language as it related to discussions about tobacco treatment: “Once in a while, [my doctor] might say, “That [smoking] ain’t good”, but he says it in a friendly manner. He’s not judging me as a human being. . .It helps me to be honest with him.” Conversely, participants objected when they felt providers were blaming or criticizing them for smoking: “To have [doctors] almost look down their nose at you because you smoked is not right.” Some respondents who smoke felt that judgment on their providers’ part would lead them to withdraw emotionally or even to terminate therapeutic relationships: “If he did judge me when it came to smoking, I’d still smoke. . .I’d just probably lie to him . . . or . . . probably just get a new doctor.”

In describing how they would like providers to present recommendations about tobacco treatment, respondents expressed a strong preference for open-ended conversations that affirm an understanding of their individual relationship with tobacco. Multiple respondents expressed frustration with perceived failure by providers to individualize their care: “It sounds like it’s just another question on the chart that needs to be checked off.” Another noted, “Just those pat answers won’t work. Everybody’s got a different reason [for smoking].” Instead, participants suggested it would be helpful for providers to sincerely engage patients in open-ended conversation, to develop personalized cessation recommendations that are consistent with their own preferences:

“[I wouldn’t just say], ‘You’re smoking, how long, you know that’s bad for you?’ I would prioritize a 5-minute, ‘You’re smoking. How do you feel about that?’ . . . Just to open the dialogue on every possible occasion.”

Multiple participants expressed frustration over what they perceived to be providers’ lack of empathy and understanding about nicotine dependence. For example, one participant felt health care professionals often failed to appreciate how powerful nicotine addiction is, and how challenging cessation efforts can be: “They’re not smokers. They’ve never been there. Don’t tell me I can just throw away my cigarettes and just be okay with it. No. It doesn’t work like that.” Others explained the positive role smoking plays in their lives: “Smoking is. . .an anti-anxiety drug,” said one, while another noted: “Cigarettes, to me, they were always my best friend . . . I loved them.” Another indicated that providers sometimes conveyed information about smoking-related health harms in an insensitive manner: “They don’t have any feelings almost. Some of them. It feels like here it is, take it or leave it.” In contrast, another participant noted the value of feeling cared for: “My doctor encourages me and I leave his office feeling good and positive. . .[T]hat encourages me to try to do better for myself.”

Conclusions

This study’s purpose was to develop a deeper understanding of the attitudes and beliefs of rural residents who are both at high risk of lung cancer and other smoking-related illnesses yet disengaged from the health care system, and to explore how rural health care providers and patients can better work together to reduce lung cancer risk. Our study revealed several significant findings regarding participants’ perceptions of lung cancer risk, receptiveness to lung cancer screening, views on the importance of patient-provider relationships, and the factors affecting the quality of these relationships.

Participants widely acknowledged concern about their personal risk for lung cancer, and for some participants this concern was intense and frequent. Yet participants’ awareness and knowledge of LDCT screening was low. However, while some expressed reluctance for screening, most participants appeared at least somewhat receptive to LDCT. Interest in LDCT appeared to be motivated by a belief that early lung cancer diagnosis would improve treatment options and patient outcomes. These findings align with a recent national online survey of people meeting LDCT screening criteria,¹² which indicated that a majority of participants would agree to screening. Our findings also suggested, however, that some individuals are reluctant to undergo screening due to a sense of fatalism about lung cancer and its prognosis.¹⁴ This finding is also supported by other research, including a qualitative study of rural Appalachians suggesting participants avoided cancer screening because they lacked faith in the benefit of medical interventions for cancer.¹³

Our findings also highlight opportunities to increase health care providers’ effectiveness in engaging rural residents in secondary lung cancer prevention. Participants viewed consistent, engaged relationships with health care providers as an important health support, suggesting that primary care providers can play a key role in educating patients about lung cancer screening, including lung cancer treatment options and early detection benefits. Additionally, while participants highlighted the importance of internal motivation to quit, they also reported being open to conversations with providers about smoking if approached in a respectful, non-judgmental way. However, our findings also suggest that providers may need additional training or support to be more effective in this role. In particular, many participants expressed the belief that providers do not understand the power of tobacco addiction and the extreme physiological and behavioral challenges of trying to quit. Multiple participants who smoked simultaneously expressed doubt about their ability to quit and their desire to be tobacco free. Those who had successfully quit smoking identified a range of trigger points that motivated their last quit attempt, suggesting that their motivation may be more fluid than what is captured by a brief smoking screening assessment.

These findings highlight the need for more education and training to improve health care providers’ treatment of tobacco addiction, to reduce stigmatization of individuals who smoke, and to engage with rural residents to lower their risk of lung cancer. The U.S. Surgeon General Report recommends brief but repeated interventions in primary care settings as an evidence-based strategy to assist patients in tobacco cessation.²² While rural primary care providers may lack time and resources for extensive training, there is evidence that even brief trainings (1 h) can improve the knowledge and confidence of physicians in having tobacco cessation conversations with their patients.²³ These findings extend to training of nurses, with registered nurses and licensed practical nurses experiencing the greatest increase in knowledge and confidence.²⁴ This suggests that engaging the broader primary care team in this effort may be effective and reduce the burden on the primary care provider.

This qualitative study of rural Maine residents at risk for lung cancer has several limitations. First, although we successfully recruited a group of socioeconomically disadvantaged participants who were at risk for lung cancer due to age and smoking history, some populations were underrepresented (men, eg, comprised just one-fourth of participants). Similarly, although participants were slightly more likely to be members of a minoritized racial group than the Maine population overall, 92% were white. This impedes our ability to draw conclusions about Black and Indigenous populations who have been the targets of recent expansions to LDCT criteria. Third, we did not collect data on health insurance coverage. Fourth, while variations in the existing relationships between respondents and primary care may affect some of the perceptions expressed during focus groups, we weren’t able to separately analyze themes or sentiment based on this variable. Finally, as an exploratory study of rural populations, we are not able to draw conclusions about urban residents. Despite these limitations, this study expands our knowledge about rural residents’ knowledge, perceptions, and attitudes regarding lung cancer risk, LDCT screening, and patient-provider relationships, and may help guide future efforts to help rural residents and healthcare providers work together to reduce lung cancer risk among this vulnerable population.