Patient Perspectives on Smoking Cessation and Interventions in Rheumatology Clinics

Abstract

Objective

Although smoking is a risk factor for cardiovascular and rheumatic disease severity, only 10% of rheumatology visits document cessation counseling. After implementing a rheumatology clinic protocol that increased tobacco quitline referrals 20-fold, current objectives were to 1) examine patients’ barriers and facilitators to smoking cessation based on prior rheumatology experiences, 2) solicit reactions to the new cessation protocol, and 3) identify patient-centered outcomes or “signs of cessation progress” following improved care.

Methods

We recruited 19 patients who smoke—12 with rheumatoid arthritis (RA) and 7 with systemic lupus erythematosus (SLE)—to one of three semi-structured focus groups. Transcripts were analyzed using thematic analysis to classify barriers, facilitators, and signs of cessation progress.

Results

Participant-reported barriers and facilitators to cessation involved psychological, health, and social and economic factors, and healthcare messaging, and resources. Commonly discussed barriers included viewing smoking as “a crutch” amid rheumatic disease, rarely receiving cessation counseling in rheumatology, and very limited awareness that smoking can worsen rheumatic diseases or reduce efficacy of some rheumatology medications. Participants endorsed our cessation protocol with rheumatology-specific education and accessible resources like the quitline. Beyond quitting, participants valued knowing why and how to quit as signs of progress outcomes.

Conclusion

Focus groups identified themes and categories of patient and health system-level facilitators/barriers to smoking cessation. Two key outcomes of improving cessation care for patients with RA and SLE were knowing why and how to quit. Emphasizing rheumatologic health benefits and cessation resources are essential when designing and evaluating rheumatology smoking cessation interventions.

Smoking is a leading risk factor for cardiovascular disease (CVD) incidence and rheumatic disease severity (1–3). Recognizing that rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) increase the risk of premature CVD (4, 5), the European League Against Rheumatism (EULAR) and other experts recommend smoking cessation care for rheumatology patients (6–9). Despite smoking cessation treatment recommendations, only 10% of rheumatology visits with patients who smoke included documentation of cessation counseling or follow-up advice (10). In the US, where annual specialty visits nearly equal primary care visits (11), ~70% of RA visits occur in specialty clinics (12) and many patients identify their rheumatologist as their “main doctor” (13). Both the central role of rheumatology clinics and the increased risk of CVD among patients with rheumatologic disease highlight the critical need to address smoking within rheumatology encounters to reduce smoking-related morbidity and mortality. While many forms of inflammatory arthritis, including ankylosing spondylitis and psoriatic arthritis, are also associated with an increased risk of CVD, associations between smoking, CVD, RA and SLE have been studied extensively and may be more profound (14). We therefore focused on RA and SLE, building upon our prior work with these populations (5, 13).

In addition to increasing CVD risk, smoking predicts both higher RA and SLE disease activity and lower treatment responses (1). Patients with RA who smoke require more disease-modifying anti-rheumatic drugs (DMARDs) (15) and are less likely to respond to methotrexate and tumor necrosis factor inhibitors than those who previously or never smoked (16, 17). Patients with SLE who have ever smoked have higher disease activity (18) and higher chronic damage index scores (1) than those without a history of smoking. Likewise, data show that, among patients with SLE who smoke, cutaneous disease is more prevalent (19) and less treatable with hydroxychloroquine (20, 21). Smoking is also associated with higher levels of RA and SLE-associated inflammatory cytokines (22, 23). Despite links with rheumatic disease activity, smoking rates among patients with RA or SLE may be as high as 30%, significantly exceeding the national smoking rate of 15.1% (24–26).

As a leading modifiable risk factor for both CVD and rheumatic disease severity, smoking is a critical target to improve health in RA and SLE populations. With this target in mind, we previously implemented a clinic protocol called Quit Connect that sought to connect patients from three academic rheumatology clinics to the state tobacco quitline for free coaching and 2 weeks of nicotine replacement. The protocol steps consisted of a) Check, documenting smoking status and smokers’ readiness to quit; b) Advise, counseling on the link between smoking and worsened rheumatic disease, and c) Connect, offering an electronic referral to the tobacco quitline. The Quit Connect protocol increased quitline referrals 20-fold, but not all who were ready to quit accepted or completed the referral process. Given the benefits of stakeholder engagement in tailoring effective interventions (27), we sought patient feedback on our approach. We organized focus groups to gather and incorporate the perspectives of patients with RA and SLE who smoke. The objectives of this study were to 1) examine patients’ barriers and facilitators to smoking cessation based on prior rheumatology experiences, 2) solicit reactions to the new cessation protocol, and 3) identify patient-centered outcomes or “signs of cessation progress” following improved care.

PATIENTS AND METHODS

Study sample

In fall 2016, using flyers and targeted letters, we recruited 19 adult patients (12 with RA and 7 with SLE) from two health systems to participate in one of three focus groups about smoking cessation. Inclusion criteria included having a diagnosis of RA or SLE, seeing a rheumatologist within one of the two health systems, and having a recent history of daily smoking. Initial criteria included both those who currently smoke and those who recently quit, but were narrowed to only current smokers after the first focus group to maximize participation by current smokers. Recruitment of men (who are less likely to have RA or SLE) and patients from racial or ethnic minorities was prioritized to ensure a diverse representation of patients. To support inclusion of a predominantly Spanish-speaking patient, a family member served as an interpreter. All focus group participants received honoraria. Given that the third focus group did not raise any new issues, we concluded data gathering (28).

The Institutional Review Board certified this work as quality improvement and program evaluation, granting a waiver of individual informed consent and permission to publish. Participants self-described their demographics during recruitment calls and provided verbal consent for audio recordings at the time of focus groups.

Data collection

Two experienced focus group facilitators led one-hour focus groups using a semi-structured interview guide that addressed three main topics. Part one explored patients’ experiences of barriers and facilitators within conversations—or lack thereof—about CVD risk and smoking cessation at their rheumatology clinic, specifically eliciting preferred vs. non-preferred aspects of cessation care. Part two elicited feedback on a short video demonstrating the new Quit Connect protocol, where the rheumatology nurse or medical assistant (MA) asks about the patient’s readiness to quit and offers an electronic referral to the state tobacco quitline (video at https://vimeo.com/212653671). The final segment identified and prioritized patient-centered outcomes that might occur as a result of the protocol. To facilitate participants’ understanding, we referred to these patient-centered outcomes as “signs of progress” toward smoking cessation. We investigated these patient-centered outcomes by 1) providing a worksheet for participants to react to and rank potential outcomes based on importance, and 2) facilitating an open discussion on other potential outcomes. The worksheet listed themes from common validated measures related to smoking cessation, including: PROMIS negative health expectancies (29), the US Adult Tobacco Use Survey (30), Processes of Change Questionnaire (31), Health Attitudes Survey (32), and other sources (33–38). At the first two focus groups, facilitators asked participants to rate each outcome on a four-category scale from “not at all important” to “very important.” Consistent with the dynamic nature of qualitative research, we asked participants at the third focus group to circle the three most important outcomes, to overcome the ceiling effects observed in prior group evaluations.

Analysis

Focus groups were audio-recorded and transcribed verbatim. Given that the primary objective of the study was to describe participant perspectives, we first identified relevant text on smoking cessation, the new protocol, and patient-centered outcomes. Codes (meaning units labeled in text) were subsequently organized into categories, sub-categories, and finally themes, using the well-established thematic analytic techniques outlined in Braun and Clarke (39) to enable more comprehensive identification of salient patterns in patient preferences and experiences. Consistent with thematic analysis methods, two trained coders (AW, LB) reviewed and independently coded all data using NVivo software version 11 (Doncaster, Australia). Disagreements were rectified by a third reviewer (CB) who also oversaw the coding scheme. The coding scheme was informed by prior qualitative work on cardiovascular prevention and clinic-based care delivery (13) with rheumatology patients and providers, and new codes based upon participant data. A detailed summary of the coding scheme is available in Appendix Table 1. Themes and categories were identified through collaborative review of the initial coding and examination of patterns across participant experiences and interrelationships between salient codes. Each theme was reviewed by all team members for consistency with collated categories and accompanying participant data to inform any needed refinements and ensure clarity and specificity in the definition of each theme (39). Consistent with the aims of this project, coders identified participant-reported facilitators and barriers, which were grouped as factors that contribute to quitting or not quitting and themes to derive patient-centered outcomes regarding smoking cessation support.

Throughout the study, we applied established approaches to ensure rigor in qualitative analysis, including the use of multiple coders, triangulation between data sources, use of an interdisciplinary research team to review and inform analysis, and member-checking (40). To conduct member checking, an approach well-supported in the medical literature (40), we shared results with focus group participants to allow them to review findings for accuracy.

Participant-rated potential patient-centered outcomes from worksheets were analyzed using basic descriptive statistics. Weighted and ranked responses were combined using a point-based system to determine which outcomes were strongly, weakly, or not endorsed. These values were assigned based on the number of participants endorsing each outcome, the priority rankings in the final group, and triangulation with discussion transcripts.

RESULTS

Overall, 89% of focus group participants were female, consistent with the epidemiology of RA and SLE. Ages ranged from 33–72 years old; 58% were white and 42% black; and 11% reported Hispanic ethnicity (Table 1). When discussing past experiences with smoking, cessation, and cessation treatment in rheumatology clinics, participants reported personal and health system barriers and facilitators organized into five themes, each supported by several categories and sub-categories (Tables 2 and 3).

Table 1.

Characteristics of Focus Group (FG) Participants

	FG 1 (n=6)	FG 2 (n=5)	FG 3 (n=8)	Total (N=19)
Age Group
18–39	1	0	1	2 (11%)
40–49	1	2	1	4 (22%)
50–59	2	1	5	8 (42%)
60+	2	2	1	5 (26%)
Sex
Female	6	5	6	17 (89%)
Male	0	0	2	2 (11%)
Race
White	3	5	3	11 (58%)
Black	3	0	5	8 (42%)
Hispanic Ethnicity	0	1	1	2 (11%)
Condition
Rheumatoid Arthritis	4	3	5	12 (63%)
Systemic Lupus	2	2	3	7 (37%)

Table 2.

Personal Barriers and Facilitators to Smoking Cessation

Themes/Categories		Barriers	Facilitators
Theme 1: Psychological factors influence smoking and cessation
Category:	Autonomy & Control	“I’ve been through a lot … and I gave up a lot, and it’s just like my last bastion.”	“The times I’ve been successful in quitting was when I was pregnant, because I wasn’t quitting for myself. It was different.”
	Coping & Comfort	“What I find hard is every day, when you get up in pain, and you go to work, you have to put this persona on: I’m a happy person, life is good. And you get out there and you show the world that you’re fine; you’re not sick. And then that cigarette is the break that allows you to get through it.”	“They say ... forget that urge, find something else to distract you. ... Whatever you enjoy doing, do that... Like I play guitar so I just start playing the guitar and forget all about a cigarette.”
	Addiction	“Most of me really wants to quit smoking, but a pretty good-sized part of me is just like ‘Why?!’ It’s a horrible addiction.”	“I want to not smoke at all, it is very important to me.”
Theme 2: Visible health effects influence cessation desire
Category:	Burden of Disease	“I’ve tried habit change, and I don’t know how many scarves I’ve knitted and crocheted. I can’t keep doing that [smoking], because I was getting so bad—my hands from my [RA] were hurting.”	“I’ve been so sick, I’m on so many medications, so many things in my life would be so much easier and better [if I quit].”
	Physical Complications of Smoking	“I think it’s hard for me because, one—I don’t feel the effects of it, like I don’t have shortness of breath, I don’t get winded, I don’t… it’s just something that I do.”	“I know I have to quit because I’m having shortness of breath, my heart is jumping all around inside my chest—it’s scary, you know. It’s scary.”
Theme 3: Social and economic costs exist for both smoking and cessation
Category:	Convenience & Cost	“All you see at [the store] is the $100 plus dollars for [nicotine replacement therapy brand]—” “Well heck, my cigarettes are cheaper!”	“I’m outside [when I smoke]. So I tend to cut down a little in the winter. Seriously, I don’t smoke [as much] because it’s so stench-y.”
	Social Pressure & Stigma	“I’ve always smoked and everybody I know smokes, it’s just a thing.”	“My daughter has implemented a ‘no smoking’ [rule]. Her house is ‘no smoking.’ [She says] ‘so mom, if you want to smoke you have to go outside.’” “You’re a leper.”

Table 3.

Perceived Health System Smoking Cessation Support in Rheumatology Clinics and Responses to Quit Connect Protocol

Themes/Categories	Barriers/Non-preferred	Facilitators/Preferred
Theme 4: Clinic staff/providers’ approach and message matter
Discussing Smoking, Quitting, & Cutting Back	“Every time I go to my appointment they do the questionnaire—’You still smoking cigarettes?’ ‘Yes.’ ‘OK.’ And that’s it... [It feels] like they don’t give a hoot!”	“I think it’s scary to think of quitting. I think it’s less scary to think of cutting back or making changes.”
Patient Relationship & Familiarity	“But we’re mostly talking to a non-smoker… I mean I knew a few [doctors] that smoked, but for the most part they’re non-smokers, they can’t relate to us trying to quit.”	“[My rheumatologist] is very supportive. ... She gives me [strategies] and just reminds me that I can do it.” “I got to two cigarettes a day, and [my rheumatologist] was happier than I was.”
Offering Control & Choice	“People forget that it’s really your life, and it’s really your decision, and there’s no embarrassment or shame whether you [quit] or not … But I think sometimes doctors inadvertently feed into that, with the tone they take.”	“You have to feel like you can do something before you can start to do it. It’s not helpful for [doctors] to just give you the directive of quitting smoking. It’s helpful for them to help you feel like you have action steps … giving you tools and ideas.”
Providing Resources & Tips for Quitting	“Everybody just says ‘quit, quit, quit!’… It just keeps feeling like they want to take something away without offering you any alternatives.”	“It would be helpful if they suggested other things you could do… find out what you like to do, what habit you might be able to replace it with.”
Theme 5: Cessation resources & health risk education are valuable but lacking
Quitline	“With the quitline, you get somebody [new] every time you call. You have to explain it over and over and over and over again.”	“I’ve used the quitline, and I find it works very well... Most of those people are actually former smokers, and they’ll tell you how long they stopped smoking for, and I find that very helpful.”
Coverage for medications	“I requested from my primary doctor and my rheumatologist to put me on [medication], and they said that my healthcare doesn’t cover that.”	“The word’s got to get out that your insurance covers [nicotine replacement therapy], because [I had] no idea.”
Health Information	“I know how bad it is…What I don’t understand is why it’s necessarily bad.” “I knew [smoking] affected me, but I didn’t know it changed the [RA/SLE] drugs.”	“I didn’t have any idea that it [smoking] changed how the [RA] medications work. Because the medications are super expensive, and there’s always days when you wish it was working better, so if I’m inhibiting that [by smoking], then I need to take that into consideration.”

Personal barriers and facilitators to smoking cessation

Participants identified psychological factors, health effects, and social and economic costs as either personal barriers or facilitators to smoking cessation (Table 2).

Theme 1: Psychological factors influence smoking and cessation

Common psychological barriers included the desire to maintain a sense of control, the use of smoking as a coping mechanism, and a history of addiction to tobacco and other substances. Many viewed smoking as “a crutch,” “a comfort,” and “the one thing I still have control over” while dealing with the burden of rheumatic disease, social and economic strain, and other stressors. Some participants reported that smoking helped them deal with family loss and trauma. Others referred to addiction as a barrier, mentioning withdrawal or psychological dependence concerns—”It’s like taking away your friend.” One participant expressed reluctance to try nicotine replacement therapy (NRT), for fear of “giving up cigarettes to become addicted to another form of nicotine.”

Theme 2: Visible health effects influence cessation desire

A commonly noted facilitator for cessation was the way in which visible negative health effects of smoking could provide motivation to quit. One participant reported, “In the last three months I could see and feel a difference in me, where I’m out of breath and wheezing… it’s scaring me now.” Another participant similarly identified negative health effects as a motivator to quit smoking, saying “[I] don’t know what’s being caused by the lupus and what [are] side effects from this buffet of medications I take, and if smoking is impacting that in any way…” One participant reported feeling motivated to quit when her primary care doctor said that doing so would allow her to go off her blood pressure medication.

Theme 3: Social and economic costs exist for both smoking and cessation

Other facilitators to cessation, though less commonly discussed, included the desire to minimize the costs of cigarettes, social stigma, and the smell of smoke. Several participants were motivated to cut down around family, and one was motivated to smoke less in winter to avoid the outdoors. However, costs for cessation products were a barrier to cessation as well.

Preferences for health system cessation support in rheumatology clinics

Theme 4: Rheumatology staff’s approach and message matters

Participants reflected on prior experiences with cessation support at rheumatology clinics, then viewed the Quit Connect protocol video to initiate discussion on preferred and non-preferred approaches (Table 3). Several participants reported that rheumatologists and rheumatology staff often asked about smoking status, but few reported receiving counseling. Of those who had received counseling, most appreciated information on the rheumatology-specific negative health effects of smoking, which would “put it on my mind and… give me something to think about.” Some participants viewed omission of cessation support as a sign of not caring—”like they don’t give a hoot!”—while others appreciated not being “harped on.” However, participants agreed that rheumatology staff must find a balance between broaching the topic intentionally and providing a non-judgmental space to discuss cessation-related challenges and goals.

Many reported that knowing more about the effects of smoking specifically on rheumatic disease and treatment would be a key motivator to quit. Most reported being previously unaware of the amplified health risk of smoking for people with RA and SLE. Few were aware of the physiological impact smoking has on rheumatic diseases, and none had heard that smoking can reduce the efficacy of rheumatic disease medication. Participants also cautioned against vague health warnings from rheumatologists or staff. As one participant said, “I mean, we do all understand it’s not good for us.”

Several participants expressed that phrasing or language can be a barrier to useful conversations in clinic about smoking cessation. Participants endorsed the use of flexible terms like ‘cutting down’ as opposed to strictly ‘quitting.’ One participant reported, “When somebody just says ‘You can never have this again,’ I wish they’d have some options.” Another agreed that the word ‘quit’ can feel overwhelming, whereas ‘cutting down’ is more inviting and manageable. Some mentioned their nurse’s or provider’s inability to relate to tobacco addiction or to provide specific tips or resources at appointments. One participant reported, “Everybody just says, ‘Quit, quit, quit!’” to which another responded, “I hate when they say that, because they don’t give you a solution.”

Some participants also provided examples of effective ways that providers have supported cessation among patients who smoke. One participant said, “It depends on how invested they are in you,” explaining that her rheumatologist took the time to discuss day-to-day steps for smoking less, and enthusiastically celebrated the goals she accomplished. Participants agreed that receiving sincere encouragement and discussing tangible strategies in clinic, especially with those who have personal smoking cessation experience, would greatly facilitate a quit attempt.

Participant feedback on new clinic cessation protocol

Theme 5: Cessation resources and health risk education are valuable but lacking

Participants responded positively to the new Quit Connect protocol, affirming that assessing readiness to quit, discussing smoking risk in rheumatic diseases, and offering resources to quit were valuable practices in rheumatology clinics. Several had never heard of the quitline and did not know that the quitline will send smokers two weeks of free nicotine replacement; most expressed that they would appreciate being offered a quitline referral at their rheumatology appointments. Many were unaware that most health insurance covers nicotine replacement. As one patient said, “The word’s got to get out that your insurance covers [nicotine replacement therapy], because [I had] no idea.” Participants felt that information on insurance coverage should be readily shared at appointments, supporting the use of the protocol talking points. One participant praised the Quit Connect protocol and details provided in the video vignette, and then stated, “It’s sad because nobody does that.”

Patient-centered outcomes or “signs of progress” towards cessation

In our final segment, participants individually reviewed and then discussed a list of patient-centered outcomes of improved cessation care (what we referred to as “signs of progress” towards cessation) on the pre-established questionnaire list. Eight of nine items were endorsed by participants to varying degrees as important aspects of their cessation journey (Table 4). Throughout the focus groups, nearly all participants rated cutting down or quitting smoking as an important outcome, and nearly all wanted to quit eventually. Participants also valued the ability to move at their own pace and set their own goals when working towards cessation. As one participant reported, “I’m not in control of much in my life because of pain, but I like to say that [smoking cessation] is something… I can make my own decision on.” Several new “signs of progress” were discussed. For example, many described wanting to quit as a crucial sign of progress towards cessation. One participant stated that being able to successfully withstand a craving would be an important step in their journey. Others agreed and added that learning strategies or identifying alternative activities (e.g. chewing gum, drinking water) would be valuable outcomes.

Table 4.

Endorsed and Suggested Patient-Centered Outcomes or “Signs of Progress”

STRONGLY ENDORSED BY PATIENTS

Smoking less or quitting *for good

Knowing that smoking makes RA/SLE worse and makes meds not work as well

Knowing how to find resources that can help me change my smoking (quitline, meds, etc.)

Being able to set my own goals and pace when changing my smoking

Having someone [*familiar, relatable] I can talk to in my clinic about changing my smoking

*Wanting to quit

*Knowing strategies to quit (alternatives to smoking, day-to-day distractions, etc.)

*Making it through a craving without smoking

MODERATELY ENDORSED BY PATIENTS

Knowing that RA/SLE add risk for heart disease or stroke

Feeling like I can make changes to my smoking

Making an attempt to change my smoking habits

^*Not a pre-established outcome; added by focus group participants.

Many emphasized the importance of receiving support from people who were familiar with their situation, either those who had personal experience with smoking, or those who lived with RA or SLE. Participants valued support from those who could relate across various contexts—clinical support (e.g. rheumatologists, nurses/MAs), public services (e.g. quitline staff), or support groups (e.g. others who smoke and/or have RA or SLE). Despite explaining during recruitment that a focus group was different from a support group, numerous participants avidly endorsed having more “groups like these, [where] everyone can relate to each other.”

New patient-centered outcomes

Beyond smoking cessation itself, the two new outcomes that participants reported as most valuable were 1) knowing that smoking can exacerbate rheumatic diseases and reduce medication efficacy, and 2) knowing how to find resources to make changes to smoking behavior. As one patient stated “What I don’t understand is why it’s necessarily bad [smoking with RA/SLE] … I would like to know that.” These overarching valued outcomes of knowing why to quit (specifically in RA or SLE) and how to quit (e.g. covered resources, day-to-day strategies for cravings) arose throughout all sections of the focus group discussions.

DISCUSSION

We sought to examine experiences of barriers and facilitators to smoking cessation care in RA and SLE because of known connections between smoking and worsened rheumatologic and cardiovascular outcomes and gaps in cessation care (10). We found that barriers to cessation among the rheumatology clinic population are both similar and different from the general population. We also found that despite healthcare aims to promote cessation, patients often received no cessation counseling and they valued additional outcomes like knowing the rheumatology-specific health risks or how to take steps toward cessation like quitline resources. We can use the knowledge gained to better design and implement smoking cessation interventions like our Quit Connect intervention in rheumatology clinics.

Personal facilitators and barriers

Focus group participants with RA and SLE reported various psychological, health, social/economic facilitators and barriers to smoking cessation that are widely supported by previous research. A UK study on smoking cessation found that prospects of improved health and financial benefit were motivators to quit smoking, but were often outweighed by the fear of losing a coping mechanism (41), consistent with ideas from our focus group participants. A 2015 Australian study (42) discussed barriers to cessation with 36 patients with RA who smoked. They identified a lack of understanding the health risks of smoking in RA and that isolation from other patients with RA was a barrier, and participants expressed interest in RA support groups, all of which were echoed by our participants. They also reported emotional attachment to smoking closely resembling reports from, echoing our own participants by comparing quitting to “losing a good friend.” Another study (43) among SLE patients found similar psychological barriers and lack of awareness of smoking’s health impact on SLE and SLE treatment. Given the barriers and facilitators identified by our study and others’, it is essential that efforts to promote cessation address the psychological, rheumatology-specific health-related, and social and economic factors that influence smoking behavior.

Cessation interventions in rheumatology clinics

Our focus group participants responded positively to our new Quit Connect protocol. While most participants reported never having explicit conversations about smoking with their rheumatologists or clinic staff, they thought such conversations would be highly beneficial. They agreed that assessing readiness to quit or cut back and discussing resources like the quitline and coverage for cessation therapies were valuable. Most said they would appreciate being offered a referral to the quitline, and they considered our Quit Connect intervention to be an effective approach to connect them to quitline services.

Two non-randomized studies reported positive benefits of RA-specific cessation efforts (44, 45), but a randomized study showed no significant difference in quit rates when comparing tailored RA-specific to non-tailored cessation care (46). This suggests that providing cessation treatment, even if it is not tailored to diagnosis, is a powerful intervention. Another study confirmed that a clinic protocol to refer patients with SLE to a general cessation clinic increased reported rates of quitting and cutting back (47). Future intervention research should evaluate approaches to engage patients at rheumatology clinics with point-of-care advice to connect them with existing cessation resources.

Patient-centered outcomes: knowing why and how to quit

In addition to endorsing eight of nine measures of smoking cessation and reduction as valuable outcomes of improved cessation care, participants strongly endorsed steps before actually quitting as signs of progress. For example, participants stated that wanting to quit is a valuable outcome, providing support for our protocol step assessing readiness to quit. Findings identified two key desired outcomes of smoking cessation support in rheumatology clinics: 1) understanding the specific health risks of smoking in relation to rheumatic disease, and 2) knowing tangible steps to take towards quitting. In other words, patients reported that knowing why and how to quit were key signs of progress. Knowing specific risks, including the fact that smoking can make RA and SLE worse or make medications not work as well, was endorsed by participants as a strong motivator to quit and therefore a valuable outcome. Likewise, participants requested specific advice and assistance on steps for how to cut back or quit. Thus, emphasizing the why and the how of smoking cessation is essential when designing and evaluating outcomes of rheumatology smoking cessation interventions.

Reports from the few other qualitative studies on smoking in RA and SLE support our findings regarding the importance of knowing why and how to quit. In the Australian RA study (42) and the SLE study (43), a lack of health information prevented participants from understanding why it is important to quit, just as we heard during our focus groups. A UK group (34) found that experiencing a known smoking-related disease was an effective motivator to quit, and thus sought to raise awareness that RA is a smoking-related disease using campaign posters and national newspaper advertisements in Scotland. Following the campaign, they observed a 45% increased awareness of smoking’s effect on RA treatment. They also reported a 14% increase in smokers considering quitting, supporting the notion that awareness of rheumatology-related health consequences can motivate cessation. Our participants felt that this information should be shared at appointments, supporting protocol talking points on how and why to quit.

Despite diverse participant engagement from two health systems, we acknowledge limitations. Though the third focus group did not raise any new issues, participation was voluntary, and self-selection among participants eager to talk about cessation may not reflect all perspectives. Future intervention research should continue to engage patients with diverse rheumatologic conditions who smoke in intervention design and evaluation.

In conclusion, our focus group identified five themes, categories, and sub-categories of personal and health system barriers and facilitators to smoking cessation, and two key outcome signs of cessation progress for patients with RA and SLE. Emphasizing both the why—rheumatologic health benefits-- and the how-- cessation resources-- is important when designing rheumatology smoking cessation interventions and evaluating outcomes. Our Quit Connect protocol connecting patients to a state quitline was well received, and future studies should evaluate this and other rheumatology clinic approaches to support cessation.

SIGNIFICANCE AND INNOVATIONS.

• Patients with RA and SLE reported that better understanding the negative effects of smoking on rheumatic disease and its treatment would motivate them to quit smoking.

• Patients who smoke requested point-of-care rheumatology clinic advice on smoking cessation strategies and connections to cessation resources like tobacco quitlines, a free resource in all states.

• Emphasizing the rheumatology-specific why and the resource-specific how of smoking cessation is important when designing and evaluating smoking cessation interventions for use in rheumatology clinics.