The Evolution of Patient Decision-Making Regarding Medical Treatment of Rheumatoid Arthritis

Abstract

Background

The migration of health care toward a consumer driven system favors increased patient participation during the treatment decision-making process. Patient involvement in treatment decision discussions has been linked to increased treatment adherence and patient satisfaction. Previous studies have quantified decision-making styles of patients with Rheumatoid Arthritis (RA); however, none have considered the evolution in patient involvement after living with RA for decades.

Objective

We conducted a qualitative study to determine the decision-making model used by long-term RA patients, and to describe the changes in their involvement over time.

Methods

Twenty participants were recruited from the ongoing Silicone Arthroplasty in Rheumatoid Arthritis (SARA) study. Semi-structured interviews were conducted and data were analyzed using Grounded Theory methodology.

Results

Nineteen out of 20 participants recalled using the paternalistic decision-making model immediately following their diagnosis. Fourteen of the 19 interviewees evolved to shared decision-making (SDM). Participants attributed the change in involvement to the development of a trusting relationship with their physician as well as becoming educated about the disease.

Conclusion

When initially diagnosed with RA, patients may let their physician decide on the best treatment course. However, over time patients may evolve to exercise a more collaborative role. Physicians should understand that even within SDM, each patient can demonstrate a varied amount of autonomy. It is up to the physician to have a discussion with each patient to determine his or her desired level of involvement.

There is a broad range of medications available for patients with rheumatoid arthritis (RA) including disease-modifying antirheumatic drugs (DMARDs) and non-steroidal anti-inflammatory medications (NSAIDs).[1] A successful treatment depends on the medication used as well as the patient’s adherence. Owing to the large assortment of treatment options available, each with variable results and side effects, a physician must formulate a treatment plan personalized to each patient and their stage of RA. It has been demonstrated that respecting a patient’s autonomy and using a collaborative decision approach between the patient and physician can produce the highest level of patient treatment adherence.[2, 3] However, physicians often underestimate the extent to which patients want to be involved in the treatment decision-making process.[4]

Historically, the common method of patient decision-making has been the paternalistic model, in which the patient passively agrees with a physician’s treatment recommendation.[5] The paternalistic decision-making (PDM) model relies on the idea that a physician is more knowledgeable and therefore more qualified to formulate a decision. One alternative approach is the informed decision-making model (IDM), which promotes the autonomy of a patient. When following the IDM model, the physician provides the patient with all information pertaining to the treatment options and allows the patient to make an informed decision on his or her own.[5] The third approach is shared decision-making (SDM) where the patient and physician share equal involvement. In SDM, following the physician’s explanation of available treatments, both parties express their preferences and come to a consensus on the best course of disease management.[5]

SDM is currently the most promoted decision model and has been shown to improve patients’ emotional health, decrease the level of decision regret, increase patient treatment adherence, increase pain control, and have a positive impact on patient outcomes.[2, 6-8] Many recent studies on RA patient decision-making have found that patients desire a shared approach when discussing treatment options with their physicians.[9-12] One qualitative study found that 59% of the participants preferred SDM, 27% preferred the paternalistic method, and 10% favored IDM.[11] However, RA is a chronic disease that requires patients to consult with their physicians regarding disease management needs and changes in symptoms over the course of their lifetime. The evolution of patient involvement in decision-making has been studied in patients with breast cancer.[13, 14] One study reported that 46% of patients preferred more involvement in their treatment decision-making process during the second consultation 3-6 months after their initial diagnosis.[14] Researchers concluded that a patient’s situational factors may alter their need for information and involvement over time. [14] Furthermore, a 3 year longitudinal follow-up study indicated that patients were 3.5 time more likely to change their involvement from passive to active or collaborative after living with cancer for many years.[13] We wished to examine whether patients with RA experienced a similar evolution of involvement.

In this study, we used qualitative methodology to determine if the same trend held true for RA patients. Our study evaluated the treatment decision-making process of RA patients who have been living with RA for over a decade. We also analyzed the evolution of patient involvement over time and investigated factors that contributed toward the evolution of their involvement.

Methods and Materials

We chose qualitative methodology to study patient decision-making regarding RA treatment. The qualitative method allowed us to determine patient involvement in decision-making as well as the reasoning behind their involvement. Our research study was guided by Grounded Theory.[15] Grounded Theory is based on conducting research without preconceived notions. For this reason, we did not develop a hypothesis at the beginning of our data collection. However, prior to creating an interview questionnaire, a literature search was conducted to aid us in determining areas of focus. Previous research on decision-making in a chronic disease setting focused on patient transition from paternalistic to shared-decision making throughout their disease course. [13, 14] Our initial interview guide focused on open ended questions that asked the subjects to describe their treatment course, how it changed throughout the years, why they made the decisions that they did, and what influenced their decision-making, in narrative form. After reading the first three interviews, more direct questions were included in the interview guide to ensure that each subject addressed similar concepts. Furthermore, additional concepts like physician attributes, reasons to stay with or change a treatment, as well as the role of outside support and insurance on patient decision-making were added following their mention by the subjects without a prompt.

Study Sample

After attaining approval from the Institutional Review Board of the University of Michigan, participants were recruited from the ongoing Silicone Arthroplasty in Rheumatoid Arthritis (SARA) study. SARA evaluated the effectiveness of silicone metacarpophalangeal arthroplasty (SMPA) compared to medication therapy alone.[16] To allow for in person interviews, we included only participants who were treated at University of Michigan Health System and excluded those from the other two SARA sites. Participants were recruited until theoretical saturation was achieved.[17] This occurred when additional interviews did not modify our coding frame.

Data Collection

Semi-structured in-person interviews were conducted between each participant and a research assistant (AC, AM). The interviews were audio-taped; each audio file was labeled with an identification number to protect the confidentiality of the participants. The interviews were conducted following an interview guide that contained open-ended questions to allow the participant to elaborate on concepts as they saw fit. The focus of the interview guide was on the initial diagnosis, medical treatment decision-making, treatment satisfaction, and surgical decision-making. This analysis will focus on the former two topics. Follow up questions were asked to help draw out details or new ideas proposed by the participants.

Data Analysis

Each interview was transcribed verbatim from the audio-recording. The research team then utilized Grounded Theory to analyze the data.[15] The first three interviews were initially read by each of the research assistants to develop the open code. Open coding was conducted by identifying quotations that represented ideas within our research focus. The main ideas in our research focus were then subdivided into subcodes that helped describe those overarching ideas in more detail. Furthermore, additional codes were developed to include ideas mentioned by the subjects that they saw to be integral in their decision-making process. These additional codes represented concepts like physician traits that were helpful or detrimental to building a good patient-physician relationship, as well as the role of insurance in the decision-making process. After open coding was applied to the first three interviews, the research team met to discuss their choice of codes and agreed on a set of common codes that comprised the codebook. The codebook was composed of categories, codes and sub-codes. Each research assistant reread the transcripts and coded quotes using the codebook. After all transcripts were coded, the team met again to ensure that the codes aligned and discussed all discrepancies. Finally, the coded transcripts were analyzed to detect the frequency of codes and whether there were similar themes in the codes compared across interviews.

Results

Twenty participants were interviewed. Like the RA population in general, our participants were largely female and middle age. Participant demographic information is shown in Table 1. Interviews were an average of 46 minutes in length (range: 24-79 minutes). Participants who were overall satisfied with all aspects of their treatments tended to give shorter interviews.

Table 1.

Patient demographic information

Patient Information (n=20)
	Gender (M/F)	4/16
	Mean age (range)	58 (22-69)
Mean years of disease duration		30 (16-50)
	(range)
Ethnicity
	Non-Hispanic	19
	Hispanic	1
Race
	White	18
	Black	1
	Other	1
Education
	<High School	1
	High School/GED	3
	Associates Degree	7
	College Degree	3
	Graduate School	6

Forty-seven codes emerged in 6 broad categories 1) Physician Characteristics 2) Diagnosis 3) Medical Treatment Decision-Making 4) Surgical Decision-Making 5) Living with Arthritis 6) Treatment Satisfaction. This analysis will focus on medical treatment decision-making as well as what factors contribute to this process.

We found that 19 of our 20 participants recalled using the paternalistic decision-making model in the first years following their diagnosis. Of the twelve participants who provided a reason for this initial treatment involvement, 9 stated that they did not know enough about RA to be able to make educated decisions on their treatment course. For this reason they allowed their physician full autonomy over their disease management. The remaining 3 participants expressed that the pain within the first few years following their diagnosis was crippling. For them it was important to find relief fast and they relied on their experienced physician to choose the correct treatment. Representative quotes are shown in Table 2.

Table 2.

Remarks and representative quotes relating to initial decision-making

Paternalistic Decision-Making

19 participants used PDM in their initial treatment decision-making process

“I was just in such bad shape. I thought I got to do something, so whatever they suggested I        thought I’d try it.”

-Female, 53 years-old

“I didn’t do anything. Whatever the doctor told me, that’s what I did.”

-Female, 66 years-old

“No I think [the physicians] pretty much made the decision themselves. What they thought was        best and say I think we’ll try this. And I said ok.”

-Male, 47 years-old

“I didn’t have any idea about what types of treatments were available for rheumatoid arthritis. So        I’d have to listen to what the rheumatologist suggested or recommended. Because like I said I had        no idea.”

-Female, 66 years-old

“Well I just wanted to feel better, that’s all. So I didn’t have a lot of say, I just listened to the        doctor and suggested what he told me to take.”

-Female, 54 years-old

Shared Decision-Making

1 participant used SDM in their initial treatment decision-making process

“We started out with, after we discussed options which were quite limited in 1984, we discussed        the options and said well we’ll try something…well what I wanted to do, I preferred conservative        measures first to see if they’ll work.”

-Female, 67 years-old

Following their diagnosis, patients described that they were ignorant in regards to the pathophysiology of RA and its treatment options. To alleviate this, patients began to gather information and seek out health professionals they felt would take proper care of them. Using a qualitative approach allowed us to learn what physician qualities patients respected or found intolerable as well as what information resources they used to increase their knowledge base. By doing so patients were able to gain confidence in their ability to increase their involvement in the treatment decision-making process.

Physician Attributes

The chronic nature of RA results in lifelong physician-patient interactions making finding a physician a patient can trust and rely on important. Seventeen of the 20 participants mentioned characteristics that allowed them to develop trust in their physician. Eight of the 17 participants were impressed by physicians who were readily available. The definition of readily available was variable and it included physical visits to the physician’s office, telephone calls, emails, and Internet chat portals. Participants were also attracted to physicians who seemed to be “looking out” for their best interest. There were a variety of ways that physician’s demonstrated such a characteristic including introducing new treatment options that may benefit the patient without the patient asking, ensuring that treatment was not impeding on a patient’s lifestyle in a way that was unacceptable, and not “forcing” newly approved drugs on a patient who was not interested in being a “guinea pig”. Other qualities that attracted participants to physicians included physicians who considered the patient’s opinions when discussing treatment options and dosage, were approachable, and explained the disease and treatments in a way the patient could understand. Representative quotes are shown in Table 3.

Table 3.

Remarks and representative quotes relating to physician qualities

Positive Physician Characteristics

“If I have an issue I can call [my physician] and he answers me or the nurse answers me right away. And    I’m on the portal and I’ve even emailed and they email me within hours. They’re very good about worrying    about my concerns. It’s been a good working relationship. I’m thankful that I have a doctor that I trust and    listens to me.”

-Female, 62 years-old

“I brought suggestions to [my physician] about I think some vitamins somebody had told me about. And of    course he agreed. Whatever I asked him if that’s what I want to do, he doesn’t say well don’t do that. Or    that’s not a good idea or that’s a myth or anything like that. He just let me do it. But I know if he felt that it    was harmful for me, he would let me know.”

-Female, 66 years-old

Negative Physician Characteristics

“I just didn’t feel comfortable asking [my physician]. If I asked her a question, she acted like, ‘You’re    questioning me?’ I didn’t care for that.”

-Male, 57 years-old

“One, in retrospect, I know that [my physician], he wasn’t very good. He continued the gold shots, he never    made any suggestions about maintenance of health, diet, exercise, or anything. He just came in and kind of    poked me, you know?”

-Female, 67 years-old

“I just feel like there’s not much time spent with me. Even looking at me, I mean, it’s just basically get in,    get out, get to the next guy. I feel that way because I can’t remember the last time I even had [my    physician] grab my hand or look at me or look at parts of my body or ask me really very significant    questions.”

-Male, 47 years-old

Sixteen participants also described several actions that led them to leave a provider. The most common reason (8 out of 16 who discussed such reasons) was poor communication. Some examples included physicians who were not approachable, used words beyond the patient’s level of comprehension, and were offended when a patient had a question regarding a suggested treatment. Other participants described encounters where the physician did not believe their level of pain or side effects. Six out of 16 participants discussed improper care as a reason to leave a physician. Examples of improper care included physicians who avoided treatment of side effects, forgot to alter drug dosage, and insisted on continuing with medication that had shown no improvement or symptom relief. Participants were also not interested in working with physicians who were unwilling to try new treatments, did not offer a variety of treatment options, and did not spend enough time in the office with them.

Information Sources

Full confidence also requires that the patient was knowledgeable of the disease pathophysiology and treatment options. Although all participants stated that their physician was a major source of information regarding treatment, many used outside sources to confirm and further develop their understanding of RA and treatment. The most common information source described was the Internet (12 out of 20). Participants described the use of search engines like Google to broadly research RA and RA medications, as well as patient-specific sites like WebMD and the Mayo Clinic’s patient care and health information site. Six participants also mentioned joining the Arthritis Foundation and reading their patient-friendly articles regarding RA treatments and life with RA. Four participants stated that they used TV and magazine advertisements as inspiration for treatment options. They further discussed the advertisements with their physicians to determine their validity. Three participants stated they liked using pamphlets to read at their leisure. Representative quotes are shown in Table 4.

Table 4.

Remarks and representative quotes relating to information sources

“And I have to tell you, at that time there was nothing the average human being could find about RA. There    was nothing in popular literature, there were no magazines. Unless I had access to a medical library I    would’ve been able to find nothing out. So anyway I was dependent upon my doctor to tell me.”

-Female, 67 years-old

“I guess I rely on WebMD, and then from there if they recommend other articles along the side I’ll go into    those. I’ll talk to friends and see, you know, what information they have. But basically, I guess, I explore    on the Internet and I guess my basic information is WebMD and I do of course subscribe to the Arthritis    Foundation. Any publications that they have, I have a few of their books, and I’ve been to a few of their    seminars and exercise classes that they’ve had. The lady conducting the seminar will give you suggestions    on reading materials.”

-Female, 58 years-old

“My physician is definitely one [information source]. Most of my physicians have not been open to…    [trails off]. I used to work for the Arthritis Foundation for about 3 years so some information came from    that. And if there were any studies that would come down the road. Some of it has been trial and error. But    like the herb that I just started taking, I probably did about 40 hours of internet research and reading,    reading the studies and everything about it before committing to take that.”

-Female, 35 years-old

“I get the RA Today and I do go online. The Arthritis Foundation also has an online study that I’ve    volunteered with and they send me a lot of information.”

-Female, 50 years-old

Current Decision Involvement

The majority of our participants (15 out of 20) stated that they currently practice shared decision-making. However, we found a variation in the level of shared involvement between participants. Five participants stated that after a treatment-focused discussion between the physician and the participant on lifestyle and medication administration preferences, they let the physician choose the medication. The participants subsequently reported on the progress of the medication and became more involved if the dosage needed to be amended. Comparatively, 5 participants explained times when they had reached a consensus on a treatment with their physician, but also instances when they proposed treatment options to their physician. One participant explained how she read a book that discussed the use of antibiotics in RA treatment and introduced the idea to her rheumatologist. Even though these patients had taken it upon themselves to introduce certain treatments, they continue to value the discussions with and recommendations from their physicians, distancing them from the IDM model. The remaining five participants described a decision-making process with equal involvement from both parties. A treatment decision was made based on a physician-patient consensus.

One participant described a decision-making model that fit IDM. He stated that in the beginning of his treatment he followed the physician’s recommendations but after a few years with no symptom relief or slowing of the disease progression, he asked the rheumatologist to prescribe him a biologic. This patient continues to take the biologic and refuses to add any of the medications suggested by his rheumatologist until the biologic stops working.

The remaining 4 participants, 2 female and 2 male, have continued using the paternalistic decision-making model stating that they believe the physician knows best and that it is the physician’s job to choose their treatment course. One of these participants was diagnosed with juvenile arthritis when she was eight. Currently, at 23 years of age, she chooses to focus on her career and allows her physicians full control in her treatment management. Representative quotes are shown in Table 5.

Table 5.

Remarks and representative quotes relating to current decision involvement

Paternalistic Decision-Making

4 participants currently use PDM

“I just wanted help, you know? So I was trying to express myself the best I could. Tell [my        physician] what I was going through and I put a lot of trust in doctors. So what they tell me, I do.        You know, I don’t really listen to the other therapies or someone says try shark fin or do this or do        that. I’m not really, I don’t venture out there too much. I just, the doctor tells me, that’s what I’m        going to do. I just figured that they probably thought they’d know best and they’re going to try to        help me, you know, so.”

-Male, 47 years-old

Shared Decision-Making

15 participants currently use SDM

“I know [my physician and I] talked about a few different drugs. [My physician said] I can tell you        that this one as of right now has the least potential side effects of any of them and I said, ‘Then        that’s the one I want to hear about.’”

-Male, 57 years-old

“I think now that I’m older and I’ve had [RA] for you know 27 years, I mean I think I’m more        alarmed and concerned about the overall effect of my organs you know. So I’m more worried        about that with medication, you know, what is all that medication doing to my kidneys? Even        though I know I have to be on medication I mean the least amount that I need, you know, is what I        want. I’ve even cut back a little bit of my medication on my own. I mean my doctor knows it but,        you know, because I don’t want to be on anything more than I need.”

-Female, 45 years-old

“Well as I learned more, and have become more comfortable talking about medical issues and        particularly the diseases that I have. Yes I expect to be treated like the intelligent adult that I am        and not just be told, ‘Here take this pill and it will be good for you.’ I expect to discuss to the        things and to know that my physician is, you know, going to listen to what I have to say. I have an        education, I know things too.”

-Female, 53 years-old

“The longer you have the disease, the longer the relationship with your doctor becomes one of, he        has information that I don’t but I know my own body and how far I’ll go to try something. I've        always had good relationships with my doctors where I have felt they listened to me. And [we]        were in a discussion, not an argument, not orders from headquarters, or any of that kind of thing,        you know, just working it out.”

-Female, 67 years-old

Informed Decision-Making

1 participant currently uses IDM

“Nobody makes the decisions for me. I make them myself.”

-Male, 50 years-old

Because the shared decision-making model was practiced by the majority of the participants, we explored what factors participants considered when making a decision. The most commonly cited reason for ending a treatment was drug inactivity. Drug inactivity was defined as a therapy that wasn’t able to stop or slow joint damage, as well as therapy that ceased working after successful disease control for some time. The second most common reason to end a treatment was side effects. Participants described varying degrees of side effects that caused a change in medication including stinging from the administration of weekly injections, skin discoloration, development of cancers, and life-threatening infections. Less cited reasons included changes in insurance coverage and a change in healthcare provider. When choosing between treatments, most participants expressed potential side effects as their primary deciding factor. This was especially true for participants who had had issues with side effects in the past. Representative quotes are shown in Table 6.

Table 6.

Remarks and representative quotes relating to reasons to choose or stop a treatment

“When we decided to go to Remicade [my physician] asked me, ‘Do you have any questions about [the    drug]?’ I said ‘side effects’ again and so he told me, he said, ‘This is probably the least potential side    effects of any of the drugs I can put you on.’ I said, ‘Good.’”

-Male, 57 years-old

“I was able to get myself off of [the medication] because it was causing the thinning of the bones and    osteoporosis and I had my hips, I broke both hips.”

-Female, 53 years-old

“I just couldn’t do the shots anymore. You had to do a shot in your abdomen. And I couldn’t, [because of]    my hands. That was before I had hand surgery. So I could hardly even grasp the skin enough.”

-Female, 53 years-old

Discussion

Our goal was to study the evolution of decision-making input in patients with long-term RA and to determine what factors contributed to the changes in involvement over time. We found that almost all (19 of 20) participants initially practiced paternalistic decision-making in the first few years after their diagnosis. However, after decades of working to control their RA, 14 of the 19 participants evolved to shared decision-making when discussing treatment options with their physicians. Participants attributed the change to a better understanding of the disease as well as an increased trust in their physicians.

Many previous studies on RA patient decision-making have shown that most patients prefer SDM when making treatment decisions with their physicians.[9-12] Our qualitative study found that SDM is currently the most common decision model practiced by the RA patients involved in this study. However, by including participants who have had RA for over a decade, we demonstrated that when patients are first diagnosed, their lack of knowledge about the disease and overwhelming debilitation may cause patients to give their physicians full responsibility in the initial treatment plan. We found that as the participants developed a trusting relationship with their rheumatologist and educated themselves on the pathophysiology of RA and its treatment modalities they gained confidence and began pursuing a more collaborative role in their treatment decisions through SDM.

It is important for physicians to recognize their role in the implementation of SDM into clinical practice. One study on RA patient decision-making explained that patients felt they could more easily participate in their treatment decision-making process when they were explicitly invited to do so by their physician, when they were taken seriously and listened to, and when the physician was open to answering questions.[11] Our study further demonstrated how physician qualities such as being readily available, considering the patient’s opinion, and explaining the disease and treatment in a way the patient could understand facilitated a trusting relationship between the patient and physician. This relationship influenced patients to transition from a paternalistic decision method to a shared decision method.

We also recognized the influence of patient education in the evolution of decision involvement. One strategy that has been recommended to help promote patient education and involvement in treatment decisions is the use of decision aids, such as computer programs, pamphlets, and videos, which a patient can use prior to an appointment.[18-20] The content of patient decision aids often include various treatment options, possible treatment outcomes, examples of patient experiences, and exercises designed to help patients clarify their values pertaining to the decision.[18] The implementation of these decision aids have been shown to help patients feel influential in their treatment and confident in the decision.[19, 20] These aids maximize the amount of information available to patients. This is important because many participants in this study recalled that their initial lack of information influenced their use of the paternalistic decision model.

Studies have shown a strong correlation between increased patient participation in the decision-making process and patient satisfaction; however, it is important for a physician not to assume all patients would like an equal partnership.[2, 6, 21-23] One qualitative study looking into RA patients’ motives for involvement in their medical decision-making process found a variation among the respondents that practiced SDM.[11] Some participants preferred more involvement in making decisions about changing medication dosage, while others preferred more involvement regarding the decision of what medicines to take. Our study found a similar variation in SDM currently practiced by patients with RA. We demonstrated that even though the majority of participants evolved to use a shared decision-making model, some gave their physician the final say, whereas others introduced treatment options themselves. The later was especially true in regards to the use of alternative medicine.

This study had some limitations. We relied on the memory of patients for events that happened many years ago and therefore our results are subject to recall bias. Additionally, because 80% of the patients who visit the University of Michigan Hand Center are white, this study was unable to represent minority populations. It is also important to note that many of the participants interviewed were initially diagnosed prior to the 1980s. At that time, medical treatment was limited to NSAIDs and gold salts.[24] The lack of variety in RA drugs left physicians with limited options to present to their patients. Furthermore, public awareness of RA, associated symptoms, and treatment options were lacking, decreasing a patient’s ability to understand the mechanism of the disease and its management at the time of diagnosis.[25] All decision-making models may not have been feasible initially for all of the participants. Finally, this qualitative study was limited by only providing a small sample of patient perspectives. Future studies including input from both patients and physicians would further support our results on the evolution of patient decision-making.

Conclusion

Our study showed a clear evolution in treatment decision-making from paternalistic to the shared decision model in long-term RA patients. These results show the necessity of educating RA patients at the time of diagnosis so decisions on a course of treatment can be tailored to the patient’s goals and values. Increased treatment adherence that stems from cooperative decision-making can lead to increased patient satisfaction.

Significance & Innovations.

• This investigation gives physicians a better understanding of the evolution in patient involvement that can occur after patients have lived with RA for many years.

• Owing to the increased advocacy for shared decision-making in clinical practice, physicians need to be informed about the impact factors such as positive physician characteristics and increased patient education can have on promoting patients with RA to become more involved in the treatment decision-making process.