It Takes Two to Tango: Patients’ and Providers’ Perspectives in Tobacco Cessation and Head/Neck Cancer

Abstract

Background

Tobacco cessation among patients with head/neck cancer continues to be challenging despite evidence that cessation improves treatment outcomes. The purpose of this study was to understand barriers/facilitators to tobacco cessation among patients with head/neck cancer and health care providers and to obtain perspectives toward the development of a patient‐centered tobacco cessation intervention.

Materials and Methods

In‐depth qualitative interviews with 10 health care providers and 21 patients with head/neck cancer (12 inpatients and 9 outpatients) who were current or former smokers.

Results

Health was a common motivator to quit among patients. Although most patients indicated that their health care provider asked and advised them to quit, they were unaware of cessation resources. Suggestions for a tobacco cessation program included involvement of former smokers, health care provider involvement/counseling, supporting written materials, and incorporating follow‐up and family support. Health care providers identified patients’ anger/frustration associated with the disease, social/demographic issues, and poor quality of life as the three most frequent challenges in treating patients. Although all providers reported asking about tobacco use, 70% emphasized a lack of formal training in tobacco cessation and lack of time. Their suggestions for a cessation program included having a “quarterback” responsible for this component with support from the entire health care team and continuity between outpatient and inpatient services to promote cessation, prevent relapse, and highlight the importance of follow‐up and social support.

Conclusion

There is great interest and need, both from patients and providers, for tobacco cessation services in the oncology setting tailored for patients with head/neck cancer in the context of cancer care.

Implications for Practice

Although the combination of pharmacotherapy and cognitive‐behavioral intervention is the standard evidence‐based treatment for tobacco dependence, it must be adapted to meet the needs and wants of patients and providers to be effective. This study provides an in‐depth examination of such needs among patients with head and neck cancer and providers in the context of cancer care. Providers and patients emphasized the need of having a trained health care provider dedicated to providing tobacco cessation through seamless integration between outpatient and inpatient services as well as follow‐up with an emphasis on family involvement throughout the process.

Short abstract

Tobacco cessation following a diagnosis of head and neck cancer improves treatment outcomes. This article focuses on the perspectives of patients and health care providers on potential strategies to promote tobacco cessation among head and neck cancer patients.

Introduction

More than three‐quarters of the 65,000+ new cases of head/neck cancer (HNC) diagnosed each year in the U.S. are related to tobacco and/or alcohol use [1, 2, 3, 4]. Tobacco cessation following an HNC diagnosis improves treatment outcomes [5], yet nearly one‐third of patients with HNC continue to use tobacco products [6] and are no more likely to quit than those with nontobacco‐related cancer [7]. In fact, nearly half of survivors of cancer could not recall being counseled by their health care provider (HCP) to stop using tobacco in the previous year [7]. In stark contrast, more than 82% of oncologists reported advising newly diagnosed patients to stop using tobacco at an initial consultation “always” or “most of the time,” with this number dropping to 72% for subsequent appointments and only 44% routinely counsel during follow‐up [8]. This seeming disconnect in communication is worrisome because patients with HNC are at high risk of developing a second primary cancer [9]. Therefore, tobacco cessation interventions should be implemented at the outset of an initial HNC diagnosis for patients who are currently smoking.

A telephone Quitline, an evidence‐based approach to tobacco cessation that combines pharmacotherapy and cognitive‐behavioral therapy [10], is an advantage for low‐income communities where additional barriers may deter individuals from quitting [11]. Pharmacotherapy and cognitive‐behavioral intervention are the standard evidence‐based treatment (EBT) for tobacco dependence [12]. In fact, recent findings indicate that, for individuals with tobacco‐related cancers, tobacco cessation services should not only be provided long term [13] but should be provided in the oncology setting [14]. However, there is sparse literature on interventions designed for patients with HNC [15, 16, 17]. The few trials we identified fell short with either a lack of biochemical verification of smoking status [18], lack of long‐term follow‐up assessment of tobacco use [19], or inclusion of only a small sample of patients with HNC [20, 21]. This last limitation is particularly problematic considering that the standard EBT approach should be adapted and tested for efficacy among subpopulations of smokers who are considered to be underserved [22]. Patients with HNC are considered underserved smokers because of (a) having at least 10% higher tobacco‐use prevalence than the general population [23]; (b) experiencing disproportionate tobacco‐related health disparities [24]; (c) a demonstrated lack of access to EBTs [8, 25]; and (d) being understudied through longitudinal, prospective trials [15]. To address the needs specific to subpopulations, such as HNC, EBTs should be culturally adapted at both micro and macro levels in conjunction with active involvement of stakeholders (i.e., patients and providers) to address the intersectionality of these two dimensions [22].

The purpose of this study was two‐fold: (a) to understand the barriers and facilitators to tobacco cessation among patients with HNC and HCPs directly involved in their care and (b) to obtain their perspectives toward the development of a patient‐centered, evidence‐based tobacco cessation intervention.

Materials and Methods

Setting

This study was conducted at the University of Alabama at Birmingham (UAB) Medical Center and Kirklin Clinic in Birmingham, Alabama through the Head and Neck Oncology Program at the O'Neal Comprehensive Cancer Center. Data were collected by two of the authors (A.B.K., E.L.L.). The study was approved by the institutional review board.

Sample

Using a convenience sample, we conducted in‐depth qualitative interviews with inpatients with HNC, outpatients with HNC, and HCPs treating this population in 2018–2019. Inpatients were recruited while recovering from surgery and outpatient participants during follow‐up visits. Inclusion criteria for patients with HNC included the following: (a) at least 18 years of age, (b) HNC diagnosis, (c) currently or previously hospitalized because of surgery for HNC; (c) smoked at least five cigarettes or other tobacco products daily currently or in the past; and (d) lack of cognitive impairment. To recruit HCPs, we engaged the Chair of the Department of Otolaryngology, who sent an e‐mail to providers explaining the study and informing them they would be contacted for an opportunity to participate. An e‐mail was then sent by the primary author (A.K.B.) to schedule interviews. The one inclusion criterion for HCPs was that they provided direct care to patients with HNC and they were identified through a list of HCPs who provided care to HNC. Based on this list, an effort was made to obtain broad sample representation (i.e., surgeons, clinicians, nurses, physician assistants). All participants were compensated with a $50 gift card.

Data Collection

Patients with HNC

A trained clinical care coordinator (E.L.L.) conducted the interviews for patients with HNC, first approaching those currently hospitalized (inpatients) or in the clinic setting during a follow‐up visit (outpatients) and ascertaining their interest in participating in an interview. Upon agreement, procedures were explained, eligibility was determined, and informed consent was obtained. Before the interview began, a brief questionnaire was administered including sociodemographic characteristics, tobacco use and history, and history of cancer and other comorbidities.

Using a topic guide, the interviewer asked open‐ended questions about tobacco use patterns, attempts to quit, and facilitators and barriers to doing so. Based on a patient's response, further probing was used. Participants were then asked what they envisioned for a new pilot tobacco cessation program and probed for details (e.g., how, when, where, who). Those with limited verbal communication were provided with a worksheet listing the questions, whiteboard, and markers. The interviewer then reviewed the written responses and probed for further insight. The topic guide was consistent with our previous studies informing development of cessation programs tailored to other subpopulations experiencing high burden of tobacco‐related diseases [26, 27].

HCPs

The interviews of HCPs were conducted by the primary author (A.K.B.). Potential HCP participants, including surgeons, clinicians, nurses, and physician assistants, were identified at the cancer clinic and invited by the department chair and the primary author, given a description of the study, and asked if they were willing to participate. Upon agreement, informed consent was obtained, and a questionnaire was administered that collected demographics, professional experience, and previous tobacco cessation training and asked participants to rate their level of confidence in providing tobacco cessation on a scale of 1 to 10 (least confident to most confident). HCP participants were asked open‐ended questions about their experiences treating patients with HNC who were tobacco users, barriers, facilitators, and their thoughts on a new pilot tobacco cessation program (e.g., how, when, where, who, potential assets and challenges taking into account the health care system current infrastructure).

Interviews for both patients with HNC and HCPs lasted between 30 and 60 minutes, which were recorded and transcribed. The total number of interviews per subgroup (outpatients, inpatients, and HCPs) were determined when within subgroup saturation was reached, that is, no new information was obtained.

Data Analysis

Demographic characteristics of participants were described using descriptive statistics. As our goal was to inform a tobacco cessation program for patients with HNC, we elected to use a descriptive design using thematic analysis of interviews as our study framework. We followed the theme development schema proposed by Vaismoradi and colleagues [28], which includes the following: (a) initialization phase, when transcripts are read and “meaning” units (themes) are highlighted, coded, and abstracted from interviews, writing notes, then classifying and comparing to other participants; (b) a construction stage, when themes are labeled and described; (c) rectification stage, when researchers reappraise the analysis process, to check and confirm developed themes; and (d) finalization phase, when a narrative is developed, giving a holistic view on the study results. Although this systematic approach is flexible, the theme development is methodical. The coding of the data was led by two authors (I.C.S., a highly trained researcher, and the primary author (A.K.B.), who is trained in coding qualitative data.

After transcriptions were completed from recorded interviews, they were coded by two reviewers (A.B.K., I.C.S.), each independently identifying emerging themes. Then, the two reviewers met to review the themes, determine if there were any discrepancies, and reach mutual agreement on themes. A frequency count of the themes was employed to identify those most prevalent, using a 40% cutoff, at which at least 40% of participants within the subgroup reported a particular theme. Acknowledging that the decision of the cutoff is arbitrary and varies by researchers, we have found in our qualitative previous research [26, 27] that using this cutoff better informs intervention development as it comprehensively captures themes.

Results

Demographic Characteristics

Of patients with HNC, 9 were in the outpatient setting and 12 were inpatient. The majority of patients with HNC (n = 21) were male and White and began using tobacco at age 17. Current smokers reported smoking 18 cigarettes per day on average, compared with 30 per day by former smokers (Table 1).

Table 1.

Demographic profile of inpatients and outpatients with head & neck cancer

Variables of Interest	Total (n = 21)	Inpatient (n = 12)	Outpatient (n = 9)
Tobacco use status, %
Current	42.9	58.3	22.2
Former	57.1	41.6	77.8
Male, %	66.7	75	55.6
Age, mean (range), yr	59.0 (36–73)	60.4 (45–72)	57.2 (36–73)
Race, %
White	71.4	50	100
Black	28.6	50	0
Employment status, %
Employed full or part time	28.6	33.3	22.2
Retired/disabled	71.4	66.7	77.7
Marital status, %
Married	42.9	41.7	44.4
Divorced/separated/single	47.6	50.0	44.4
Widowed	9.5	8.2	11.1
Education level, mean (range), yr	12.1 (5–18)	11.1 (5–18)	13.3 (9–18)
Cancer type, %
Primary	81	75	88.9
Secondary	19	25	11.1
Age of tobacco use initiation, mean (range), yr	17.2 (8–25)	18.3 (8–25)	15.8 (7–23)
Number of cigarettes per day, mean (range)
Current smokers	17.8 (11–30)	18.3 (11–30)	15.8 (6–30)
Former smokers	30.0 (10–90)	24.0 (10–60)	34.3 (4–90)

Overall, HCPs (n = 10) had worked with patients with HNC for just more than 20 years. Approximately 40% had received training in tobacco cessation counseling strategies; however, only one HCP reported receiving training in pharmacological management of nicotine dependence. HCPs were somewhat confident in their ability to help patients quit smoking (Table 2).

Table 2.

Demographic profile of health care providers (n = 10)

Profession, %
Head and neck/oral and maxillofacial surgeon	40
Inpatient registered nurse	20
Outpatient registered nurse	10
Medical oncologist	10
Radiation oncologist	10
Physician assistant	10
Age, yr, mean (range)	46.8 (33–62)
Gender, %
Female	80
Male	20
Time in medical practice, mean (range), mo	241.8 (24–408)
Time working with patients with cancer, mean (range), mo	219.0 (72–360)
Received formal tobacco cessation training (counseling), %	40
Received formal tobacco cessation training (pharmacological approach), %	10
Confidence in assisting patients with HNC to quit tobacco use (scale 1–10), mean	5.5

It should be noted that surgeons in this context are actively involved in the clinical care of patients with HNC.

Abbreviations: HNC, head and neck cancer.

Qualitative Interviews—Patients with HNC

Emerging themes among the inpatient and outpatient patients with HNC can be seen in Table 3. Among the themes are benefits and drawbacks of smoking, reasons to smoke, reasons to quit, the approach used by their HCP regarding quitting, knowledge of cessation programs, their thoughts on a new cessation program format, and family support systems.

Table 3.

Emerging themes among patients with head and neck cancer (n = 21)

Themes	Inpatient, % (n = 12)	Outpatient, % (n = 9)
Reasons for quitting
Illness/cancer/health	66.7	66.7
Family	33.3	22.2
Money	16.7	22.2
Benefits of quitting
Health	75.0	55.6
Improved appearance	33.3	22.2
Money	33.3	0
Drawbacks of quitting
None	50.0	33.3
Cravings	8.3	33.3
Nothing to do with hands	0	22.2
Never tried to quit	41.7	11.1
Past quit attempts
Patches/Chantix/Wellbutrin	16.7	33.3
Decrease number of cigarettes	8.3	22.2
Hardest thing about quitting
Cravings	33.3	11.1
Being around smokers	25.0	11.1
Kicking a habit	0	33.3
Effective strategy to quit
Abruptly (“cold turkey”)	33.3	22.2
Health care provider approach
Asked	91.7	100
Advised	66.7	66.7
Did not advise	33.3	22.2
Assisted	58.3	55.6
Lack of knowledge about cessation programs	75.0	66.7
Format of new cessation program
Examples of former smokers	75.0	44.4
Nurses/HCP involvement	66.7	55.6
Speech/tablets/technology	75.0
Flyers/booklets	75.0	88.9
Counseling	41.7	55.6
Peer support group	41.7	55.6
Follow‐up		66.7
Concerns with pharmacologic therapy	66.7	66.7
Understanding/empathy	41.7	55.6
Importance of family involvement	66.7	77.8

Frequencies below 40% are included to provide a more comprehensive picture of barriers and facilitators.

Abbreviation: HCP, health care provider.

Benefits of Smoking

Stress relief was a frequent reason endorsed by inpatients and outpatients. “I think it's more my psyche because I'm associating it with calming down, kind of like a stress reliever or whatever the case” (inpatient, female, 45 years of age, current). Pleasure was more frequently given as a response by outpatients than inpatients. “I enjoy smoking when the smoke came out of my mouth” (inpatient, male, 69 years of age, former). The majority of inpatients indicated that there were no benefits.

Drawbacks of Smoking

Tobacco‐related diseases were endorsed by both inpatients and outpatients. “Well, luckily, I grew up in an era where the drawbacks of smoking were readily available. You know, cancer and heart disease, lung disease. I knew all of those risks, and I accepted those risks. Although, admittedly, everyone accepts the risk until that risk comes—your payment is due.” (outpatient, male, 36 years of age, current). Physical appearance, particularly as it relates to smell was also a frequent theme; “.. . the smell in your skin.. . the aftertaste and smell in your clothes” (inpatient, male, 69 years of age, former). “Stain in your teeth…” (inpatient, male, 62 years of age, current).

Reasons for Smoking

The most common reason for smoking among participants was modeling/peer pressure, particularly among the outpatient group. In one example of modeling, a patient reported, “Seeing other people who smoked. I wanted to be like them” (inpatient, male, 56 years of age, current). Other patients recounted smoking because of family or friends, and some even mentioned the exposure to tobacco in other aspects of their lives. “Just when you're growing up, it's everybody around you is smoking. It's like you and I talked about earlier, you know. My first job ever was working in the tobacco field and it was back in the deep, in the deep south. And just everybody was–it was a different thing. I knew very few people that didn't smoke” (outpatient, male, 65 years of age, current).

Reasons for Quitting

The most common reason for quitting among patients in both groups was the effects that smoking had on their health. A defining moment for many of the patients was their diagnosis of cancer. Some viewed cancer as the motivation. “Yes, I got sick. Cancer motivated me to quit” (inpatient, male, 55 years of age, current). Other comorbidities were motivators for quitting as well. “The cost and my health was more important than smoking. After going to dialysis for kidney disease I realized I need to stop …” (inpatient, male, 69 years of age, former). When asked about drawbacks of quitting, half of inpatients indicated “none,” whereas a small percentage was concerned about cravings. More than 40% of inpatients had never tried to quit tobacco use.

HCP Approach

A majority of patients reported that their providers had asked about their smoking status and plans for cessation. “Yes, everybody at every visit” (inpatient, male, 62 years of age, current). Furthermore, two‐thirds of patients reported that their HCPs had advised they stopped smoking. Most advice appeared to be focused on the health effects of smoking. One participant noted their provider said, “… you will be a lot happier. You are not going to have repetitive sickness, and things like that” (outpatient, male, 65 years of age, former). However, at times this information was forgotten, “Doctor told me the benefits at the time of my diagnosis. I do not remember what he told me” (inpatient, male, 56 years of age, current). More than half of participants indicated that their HCP had provided assistance, mostly pharmacological.

Lack of Knowledge about Cessation Programs

Knowledge of existing tobacco cessation programs was assessed among patients in both settings. Many demonstrated a lack of knowledge about any available cessation programs: “I don't know if there is any in my area. I have no idea” (outpatient, female, 58 years of age, former). One participant confirmed not knowing of a program but would consider being involved. When asked if he knew of programs, one said, “No, ma'am. I'd do a couple like an AA program. I think that's the way it should be to find out why people smoke or what they have to do to quit” (outpatient, male, 54 years of age, former).

Development of a Tobacco Cessation Program—Format

There were many ideas of how to format a new tobacco cessation program. Approximately 75% of inpatients believed that there should be participation of former smokers in this programming. “People with personal experience (hands on) should be involved in the program” (inpatient, female, 58 years of age, current). Some believed this could take the form of an HCP with smoking experience. “You had to have a smoker and doctors, lawyers, counselors, therapists with prior smoking experience” (inpatient, male, 66 years of age, former). Others believed this could be someone outside of the health care field. “I think it should be a combination of people… not even from a medical standpoint. Because if you're a medical person and you have never smoked, I might not want people that never smoked. Because you can't really tell me anything, you know” (inpatient, female, 45 years of age, current).

Another suggestion, made predominantly by the outpatients, was the use of flyers and booklets. Some reported that having the information about the effects of smoking in a written format could impact their decisions, “…information is key. When I started smoking I didn't have all the information” (outpatient, male, 36 years of age, former). Some advocated for the use of visual graphics: “… just something where they can read up on it—what it's going to do—what it's going to turn out—their life's going to be if they keep on smoking… give them something to think about… or have a book with pictures what happened to people that have smoked…” (outpatient, male, 54 years of age, former).

Participants believed these written materials should also focus on coping strategies: “Teach them how to get their minds… reading materials… that get your mind off smoking… something for the itch” (outpatient, female, 59 years of age, former). “… It'd be a pamphlet dealing with working on emotional crutches, dealing with the smoking and quitting and bring that format type how'd you tie it all in together” (outpatient, female, 58 years of age, current).

Most participants indicated the need for counseling while outpatients also indicated the need of a peer support group. The majority of inpatients and outpatients emphasized the importance of follow‐up; “… provide the things that would help them to be honest about following the program. To check in with the doctor or clinic to check to see if the individual is still following the program” (inpatient, male, 69 years of age, former). “The follow‐up support, I think, would be really important” (outpatient, male, 65 years of age, former).

Family Involvement/Support

Some participants felt that their family was one of the main reasons they had quit smoking: “Yes, if it wasn't for my family, I'd still be smoking;” “Absolutely, yes. There are things that your children can do to change your mind quicker than you can yourself” (outpatient, male, 61 years of age, former).

Qualitative Interviews—HCPs

Emerging themes from HCP interviews are described in Table 4. These included their challenges in treating patients with HNC, resources, current approaches to cessation discussions, barriers to addressing cessation, their thoughts on the development of a cessation program, and anticipated challenges in implementing such a program.

Table 4.

Emerging themes among health care providers (n = 10)

Themes	%
Challenges to treating patients with HNC
Anger/frustration of situation	50
Social issues/demographics	40
Poor quality of life	40
Limited resources
Lack of available programs (self‐help brochures/Quitline)	80
Unawareness of current inpatient cessation program	60
Effort to refer for services	50
Current approach to tobacco cessation
Ask and advise	100
Discuss pharmacologic options	70
Comfortable addressing tobacco cessation	80
Unsure of success of trying to quit	60
Association with cancer and treatment	40
“Cold turkey”	40
Importance of social support	40
Barriers to addressing tobacco cessation
Lack of time	40
No training in tobacco cessation	70
Development of a tobacco cessation program
HCP involvement with formal training	70
Importance of follow‐up	60
Start as outpatient	40
Responsibility of the entire team	40
Challenges in developing a new program
Cost	60

Abbreviations: HCP, health care provider; HNC, head and neck cancer.

Challenges to Treating Patients with HNC

One common challenge HCPs noted among their patients was anger and frustration over their situation. “Some of them have had to have a trach replaced, then, the airway, they're breathing different ways. So, they're angry about going through that surgical process and a lot of them are angry. Not so much at us but at the illness or the situation that they're in. So, they get frustrated with us a lot but I don't take it personally because I know it's not directed at me. They'd rather just not talk about it. They get frustrated if they try to communicate, which they have a different way of communicating with you. If you don't understand what they're trying to communicate to you, then, they're really frustrated about that. They might be frustrated because they're not able to eat or they may not be able to drive for a while” (head and neck [H&N] surgeon).

Many HCPs noted social issues and demographics as barriers to treating patients with HNC. “Well, I would say there's a lot of challenges. The patient population is difficult because they're underserved, underinsured, a lot are unemployed, lower‐income. Some are illiterate, not a lot of support, so that translates to a delay in getting care” (physician assistant).

Two HCPs mentioned the lack of social support experienced by these patients and how it impacted their care and follow‐up. Other HCPs also emphasized the interference with basic functions that lead to poor quality of life. “Then, there is just the complexities as far as head and neck cancer specifically. It always affects speech and swallowing. Things that are so fundamental to how people interact with other people socially and just quality of life kind of stuff.” (H&N surgeon).

Limited Resources

The majority of HCPs addressed their lack of/limited resources. Most HCPs noted that the only resources available to these patients were the telephone Quitline or self‐help brochures. When they make an attempt to refer for services, they were limited to sending the patients to the Quitline or back to their primary care providers. Although our institution has a limited inpatient tobacco cessation program, 60% of HCPs were not aware of this program. “That is a problem because I have tried hard to find a way to get my patients into an outpatient tobacco cessation program. To the best of my knowledge, and maybe it is because I do not know where to send them. But, I have not had a lot of success in getting them into anything that is truly meaningful” (H&N surgeon). “Then, we have the Quitline that we give them. There is a brochure about that. I really do not know what is involved in that” (nurse).

Current Approaches to Tobacco Cessation

HCPs unanimously reported using the “ask and advise” approach when discussing tobacco cessation with their patients. “So we first go through: How long have you smoked? What things have you tried in the past to stop? or Have you really tried to stop ever? And that's really the starting place there” (radiation oncologist).

Some HCPs noted how, after asking, they were able to discuss how it would affect treatment for HNC. “We ask them if they use tobacco, how much, and how long. We educate them about it as a risk factor for the disease that they have, and the risk that it will make their treatment less effective and increase the risk of recurrence if they continue to smoke. It is very informational, declarative, and directive” (H&N surgeon).

Only two providers indicated providing written information. The majority of HCPs reported that they discussed pharmacological options and prescribed them. “We usually talk. I do not push, but I talk to them about Wellbutrin and/or Chantix to try to get them to quit that way. Because those are the medications they can actually take safely and concurrently with their treatment” (H&N surgeon). Interestingly, although 80% of HCPs indicated feeling comfortable addressing tobacco cessation, when it comes to assisting patients with HNC to quit tobacco use, 60% of them were unsure whether they were successful in their approach.

Barriers to Addressing Tobacco Cessation

The most commonly cited barrier to addressing tobacco cessation was the lack of training in tobacco cessation. According to one physician assistant, “None of us have had any formal training that I know of. We just try to get it in when we can, basically” (physician assistant). One HCP mentioned how cessation skills during residency training were developed informally. “We talk about it when we're in residency a little bit. I don't know if you'd consider that formal training as much as just sort of watching what your mentors do in clinic. I will say I don't think I've ever had formal training in a didactic sense” (H&N surgeon).

Some mentioned that addressing cessation was further exacerbated by a lack of time. “…in a rushed situation when you're trying to see a large number of really sick patients, you don't have the adequate amount of time to really spend with them, to counsel them, to help them” (radiation oncologist).

Development of a Tobacco Cessation Program—Format

Different factors were discussed in terms of having a tobacco cessation program, such as the setting, content, and structure of the program. A majority of HCPs (70%) agreed that the program should have HCP involvement from someone who has received formal training in tobacco cessation. In particular, many agreed that there should be a designated HCP for this role. “I think they should have a designated nurse to do this. Or somebody that the patient can meet one on one, so when this person talks to them they would already have a rapport… I think if they have a relationship with that patient, you know you'd be more effective than having somebody call” (nurse).

Although there were many differing thoughts on the content and the structure of the program, a majority mentioned the importance of structured follow‐up. For example, “…then followed at least through their treatment until they're successful. I don't know. Or, until they've quit, or opted out, or something like that. I mean, probably several months that would be my guess. It may not need to be clinic. But just maybe those could be phone calls…” (H&N surgeon).

However, HCPs emphasized that although it is critical to have a “quarterback” responsible for tobacco cessation, the reinforcement of the message is the responsibility of the entire team. Another frequent theme included the suggestion of starting the program while they are outpatients and follow‐up them through surgery to prevent relapses.

Development of a Tobacco Program—Challenges

The cost of a tobacco cessation program was heavily cited as a challenge for starting a new cessation program. “So, the money going into it, obviously any of these multidisciplinary problems, finances are going to be the biggest barrier to try to set up these multidisciplinary clinics. I think that is the bigger challenge” (oral and maxillofacial surgeon).

Three of the 10 HCPs indicated “time” as a challenge, and two indicated a lack of space. Another participant noted the difficulty of placing a quantity of benefit on the program in outcomes. “Time and money. I mean that is always hard to quantify the financial benefit of a program that you do not immediately bill for. If it does not have work relative value units attached to it, then it is kind of near your cost‐benefit analysis as one layer removed. You have to be able to. I think everybody knows it is a good idea to get people to quit smoking. But actually quantifying how successful you are and what that is worth in terms of cost saved could be challenging. I mean there are experts who know how to do that. I think there are people here at UAB who have done work looking at quantifying the value of non‐billable programs” (H&N surgeon).

Discussion

Our study qualitatively assessed facilitators and barriers to smoking, barriers to quitting, and opinions on effective cessation programs among both patients with HNC and HCPs. Patients with HNC provided valuable insight into why they smoked or continued to smoke, their understanding of the risks, and factors preventing their quitting, including a lack of knowledge of cessation programs. Although the majority saw no benefits to smoking, two benefits identified included stress relief and the physical pleasure derived from the act of smoking. Smoking to relieve stress has long been a globally documented reason for why people smoke, and our study was similar in that regard [27, 29, 30]. Considering that smoking is associated, in particular, with financial stress [31] and the negative association between low socioeconomic status and a higher tendency to use tobacco [32, 33, 34], it is important to note that a combination of these two factors can cause a cumulative effect on low‐income smokers [32]. Additionally, the stress from a cancer diagnosis may facilitate a patient's continuation of tobacco use [35]. The second benefit noted by our participants with HNC, the pleasure from the act of smoking, aligns with Audrain‐McGovern and colleagues’ study on the effect of low hedonic capacity on increased smoking onset in adolescence [36]. In our study, the majority of participants with HNC began smoking at an early age and addressing low hedonic capacity may require use of pharmacological reinforcers, as they did in the aforementioned study. Closely related to the benefits of smoking were the reasons to smoke. These two themes are differentiated by the early exposure and normalization of tobacco use identified in the theme of reasons to smoke.

The drawbacks and reasons to quit were not surprising. Tobacco‐related diseases, the unpleasant physical characteristics of stained teeth, a bad aftertaste from tobacco, and the smell on clothes and skin were the primary drawbacks reported by patients. Tobacco‐related diseases and comorbidities were also mentioned as reasons to quit, as did the cost of cigarettes. These reasons mirror other studies in tobacco cessation behaviors, such as Buczkowski et al., who also found that concerns about health and the unpleasant smell influenced decisions to quit [37]. It is important to note that, although the majority of patients with HNC do eventually stop using tobacco, it is common for them to relapse [16]. Considering that patients with lung cancer often relapse soon after discharge from the hospital, it is important for comprehensive tobacco cessation services be readily available as soon as possible after a cancer diagnosis [38].

It appears that the lack of knowledge of cessation programs is of primary concern when it comes to quitting tobacco use rather than their HCP not approaching the topic. The majority of patients reported that their HCP had asked about their smoking status and plans for cessation, which echoed the HCPs’ reports of using the “ask and advise” approach. Also, more than half of patients mentioned their HCP had provided pharmacological assistance, which is the standard EBT for tobacco cessation [12, 39]. However, many participants with HNC were unaware of cessation programs they could access. Participants had excellent ideas for features in a tobacco cessation program, including flyers and booklets with thought‐provoking visual graphics. They proposed that coping strategies be taught in dealing with unpleasant effects from stopping tobacco and advocated for the inclusion of peer support groups, which should include therapists and counselors who were previous smokers. However, peer counseling and support are not enough on their own to increase abstinence rates. Malchodi and colleagues found that although their intervention focusing on peer counseling reduced the number of cigarettes smoked, abstinence rates did not increase [40].

Finally, among participants with HNC, family support was a recurring theme in patient interviews. In fact, many participants stated that their family was the reason they gave up tobacco. Family support of quitting tobacco use significantly impacts success [41], so much so that those feeling pressure to quit who are not ready often hide their smoking and feel a profound sense of guilt, particularly when they have been diagnosed with cancer [42]. In contrast, when family members, particularly spouses, still smoke while a patient with HNC was trying to quit, patients are more likely to fail at their attempt [43]. With competing motivations of quitting because of a cancer diagnosis and continuing to smoke as a “guilty habit,” patients with HNC can find themselves in a difficult situation that might hamper their cessation [17].

Overall, HCPs exhibited an understanding of the challenges patients with HNC experience and how social factors impact tobacco cessation treatment options and outcomes. An HNC diagnosis can have a devastating effect on a patient's physical, emotional, and financial states [44, 45]. These may be compounded by low‐income, male gender, and heavy drinking [46], potentially interfering with successful tobacco cessation [47]. Thus, patients with HNC with these characteristics may need intensive follow‐up services to assist them in long‐term quitting of tobacco. Although the majority of the study's participants reported that their doctors asked them about their tobacco use and advised them to quit, only a few were asked at every appointment. This echoes findings from Weaver et al.'s study of oncology providers’ provision of smoking cessation assistance [48]. The researchers found that whereas new patients were “asked and advised,” only 30% of providers followed up on patients’ progress with quitting. As well, they found that less than 20% were highly confident in their counseling abilities with patients who smoked.

Four specific factors have been suggested to maintain high quality care in addressing tobacco dependence at cancer centers: consistency in smoking status assessment among HCPs, inclusion and electronic tracking of patients’ smoking status and tobacco cessation referrals, assessment of barriers patients with HNC may experience when accessing smoking cessation treatment, and evaluation of current research in cancer treatment [49]. HCPs agreed that incorporating a tobacco cessation program within their practice model would benefit patients and could ensure access to quality cessation services. However, their lack of formal training, time, and space in their own clinics to develop their own programs drive most HCPs to refer patients to other cessation programs, such as a Quitline [50, 51], interrupting continuity in care.

As this study's focus was to gain perspectives of patients with HNC and HCPs to develop a tobacco cessation program within the oncology practice model, we searched for cessation resources in the state of Alabama and found they were quite limited. Although the Alabama Tobacco Quitline offers free online and telephone counseling services for state residents [51], those seeking nicotine replacement therapy are referred back to their primary care provider, further disrupting continuity of care. Unfortunately, this lack of continuity in cessation care could negatively impact those without a primary care provider. Furthermore, because Alabama did not expand Medicaid under the Affordable Care Act, many low‐income residents do not have health insurance coverage [52], affecting access to primary care. Considering the profile of low‐income and un/underinsured patients with HNC (e.g., more likely to smoke or use alcohol, have occupational exposures) [23], lack of access to pharmacotherapy, higher levels of disparities [24], and sparse representation in longitudinal trials [15], it is imperative that this underserved population [22] have the supportive, high quality access to cessation programs within the oncology setting as recommended by Cinciriprini and colleagues [14]. Providing these services would give patients with HNC broader access to, at the very minimum, the standard EBT for tobacco dependence [12] in order to improve outcomes.

Limitations and Strengths

Our work yielded rich information on stakeholders’ insights on barriers/facilitators to tobacco cessation as well as concrete suggestions toward the development of tailored strategies to promote tobacco cessation among patients with HNC. However, generalizability of results is limited. Furthermore, we did not specifically ask if participants had received a Quitline referral; although, some HCPs mentioned referring patients to a Quitline. Some interviews with inpatients were not as rich as those with outpatients and HCPs as they were unable to talk, and responses were limited to written responses. Thus, probing was limited. However, these patients were very willing to provide their insights and suggestions to help others in the future.

Conclusion

This study makes a relevant contribution toward understanding tobacco cessation needs/wants of both patients with HNC and HCPs that can inform the development, implementation, and evaluation of a patient‐centered tobacco cessation program in the context of HNC care at a tertiary center serving urban and rural patients statewide. HCPs and patients with HNC agreed on the need of having a trained health care provider dedicated to providing tobacco cessation through seamless integration between outpatient and inpatient services as well as follow‐up with an emphasis on family involvement throughout the process.

Author Contributions

Conception/design: Alexandra B. Khodadadi, William Carroll, Isabel C. Scarinci

Provision of study material or patients: Alexandra B. Khodadadi, Erica L. Lee, Isabel C. Scarinci

Collection and/or assembly of data: Alexandra B. Khodadadi, Erica L. Lee

Data analysis and interpretation: Alexandra B. Khodadadi, Erica L. Lee, Barbara Hansen, Isabel C. Scarinci

Manuscript writing: Alexandra B. Khodadadi, William Carroll, Erica L. Lee, Barbara Hansen, Isabel C. Scarinci

Final approval of manuscript: Alexandra B. Khodadadi, William Carroll, Erica L. Lee, Barbara Hansen, Isabel C. Scarinci

Disclosures

The authors indicated no financial relationships.