Concerns of Patients Actively Contemplating Total Knee Replacement: Differences by Race and Gender

Transcription

1 Arthritis & Rheumatism (Arthritis Care & Research) Vol. 51, No. 1, February 15, 2004, pp DOI /art , American College of Rheumatology ORIGINAL ARTICLE Concerns of Patients Actively Contemplating Total Knee Replacet: Differences by Race and Gender HUAN J. CHANG, 1 PRIYA S. MEHTA, 2 AARON ROSENBERG, 3 AND SUSAN C. SCRIMSHAW 2 Objective. To examine differences by race/ethnicity and gender in patients concerns regarding total knee replacet (TKR). Methods. Focus groups of patients actively considering TKR were conducted. Discussion included patients questions and concerns regarding TKR. The software ATLAS.ti was used to tabulate themes by race/ethnicity and gender. Concerns raised by focus group participants were compared with thematic content from patient joint replacet information materials. This comparison used patient literature from 3 high-volume academic TKR centers, the Arthritis Foundation, and the American Academy of Orthopedic Surgeons. Results. All groups shared similar concerns. However, some issues were more prevalent among certain gender and racial groups. For instance, concerns regarding anesthesia were more important to white Americans and concerns regarding recovery were more important to. Some of these concerns were not addressed in the available patient literature. Conclusions. Different gender and racial subgroups focus on different concerns when considering TKR. These differences may contribute to gender and race/ethnicity disparity seen in TKR use. KEY WORDS. Total knee replacet surgery; Race; Ethnicity; Gender. INTRODUCTION This article provides evidence that may be helpful in eliminating racial disparity in the rate of total knee replacets (TKRs) performed in the US, the sixth arthritisrelated Healthy People 2010 objective (1). Knee osteoarthritis (OA) is a leading cause of disability in the United States, affecting approximately 6% of the adult population (15.7 million adults) (2 4). Total joint replacet is considered a valuable treatt for end-stage OA; it is cost effective (5), can alleviate the majority of disability associated with these joints, and can greatly improve quality of life (QOL) for these patients (6 8). However, TKR remains underutilized among the US population, with wide variation by race/ethnicity and gender (2,9 13). Reasons for this variation remain uncertain. This study Supported by the Arthritis Foundation, Greater Chicago Chapter and Multidisciplinary Clinical Research Center in Rheumatology grant P60-AR Huan J. Chang, MD, MPH: University of Illinois at Chicago and Veteran s Administration Hospital, Chicago, Illinois; 2 Priya S. Mehta, MD, Susan C. Scrimshaw, PhD: University of Illinois at Chicago; 3 Aaron Rosenberg, MD: Rush- Presbyterian-St. Luke s Medical Center, Chicago, Illinois. Address correspondence to Huan J. Chang, MD, MPH, 900 South Ashland Avenue, 1158 MBRB, Medicine/Rheumatology, M/C 733, Chicago, IL Submitted for publication September 21, 2002; accepted in revised form March 16, examines differences in patients concerns regarding TKR by race/ethnicity and gender. Significant disparities exist in TKR utilization between s and white Americans. Medicare enrollt and claims data show that whites received TKR at a rate of 18.2 per 10,000, more than twice that of African Americans (12). The lower rates persist even when adjusted for age, sex, and insurance coverage (9). These findings suggest many minorities are not receiving needed interventions to decrease pain and disability. Data from the Framingham study indicate that knee OA is more common in, rates increase with increasing age, and some groups of have 1.7 times the incidence of knee OA compared with (14). Wo also have significantly worse preoperative functional status than at the time of TKR for OA (13,15 17). These differences persist even after adjusting for demographic and clinical characteristics. Recent findings demonstrate that decreased preoperative functional status leads to worse postoperative function (18). These data suggest that choose TKR at a more advanced disease stage than, possibly at the expense of QOL. METHODS All patients actively considering TKR were recruited in sequence from an orthopedic surgeon s office for each focus group as it was scheduled. Only 1 patient refused participation in the study, citing time constraints. Due to 117

2 118 Chang et al Table 1. Patient characteristics (n 37) Age, range, years Household income $30,000/year, % Working, % Education high school, % One or more other people in the house, % the diversity of the patient population, no special efforts were needed to obtain a reasonable distribution of race and gender. Subjects were divided into 6 focus groups. A professional focus group leader moderated discussions. Each subject had been recomded to receive TKR but had made no decision regarding TKR at the time of participation. Focus group methodology is considered the ideal method to investigate complex behaviors and motivations by allowing group interaction in a nonthreatening environt (19). Focus groups were conducted as the first phase of a larger study on race/ethnicity and gender variation in elective procedure utilization. The results presented here were considered significant enough by the investigators to warrant distribution before completion of the entire study. Conversations were tape recorded for data analysis. Transcriptions were coded and analyzed for thematic content by 2 independent evaluators. The computer software program ATLAS.ti (Scientific Software Developt, Berlin, Germany) was used to tabulate theme frequency by sex and race/ethnicity. Concerns raised by focus group participants were compared with thematic content from patient TKR information materials. This comparison utilized patient literature from 3 high-volume academic TKR centers (The University of Iowa Hospitals and Clinics, Iowa City, Iowa; the Rothman Institute at Jefferson, Philadelphia, Pennsylvania; and Joint Replacet Institute at the University of California at Los Angeles), the Arthritis Foundation (AF), and the American Academy of Orthopedic Surgeons (AAOS). RESULTS Thirty-seven people, all actively considering TKR, participated in the 6 focus groups between 1998 and 1999 (Table 1). Participants ranged in age from 39 to 76 years (mean age 60 years); 12 were and 25 were. Twenty identified themselves as white Americans and 17 as African Americans. Of the white Americans, 5 said their culture and upbringing was mainstream white American but their ethnicity included Latino (n 4) and Native American (n 1). Because results for those 5 individuals were similar to those of the other white Americans, the results we present are based on analysis comparing 20 white Americans with 17 s. Participants spontaneously generated 126 questions representing areas they wanted to understand better prior to making a decision regarding surgery. We divided these issues into 3 categories: 1) preoperative phase, defined as issues that clarify patient understanding of the procedure up to the surgery; 2) intraoperative phase, defined as the surgery itself plus the immediate postoperative recovery period in the anesthesia recovery room; and 3) postoperative phase, defined as the period after the patient leaves the anesthesia recovery room. Table 2 lists participants concerns, tabulated by race/ethnicity and gender. Figure 1 shows the distribution of questions asked by all respondents about the preoperative phase (n 60). Questions concerning alternatives to TKR (other options) were most frequent (18%), followed by concerns regarding pain medication and addiction possibilities (17%). White American asked 57% of the preoperative questions (n 34), covering the widest range of topics, including knee anatomy, devices and device technology, employt issues, physician trust, possibility of pain medication addiction, lifespan of the prosthesis, other options, and optimal timing of TKR. This was the only group that asked about potential drawbacks to surgery. expressed a desire to know the criteria for TKR and reasons for their own candidacy for TKR. They also tioned finances. expressed interest in devices and device technology, whereas African American expressed concern over financial issues, specifically their health insurance coverage of TKR. Only 2 concerns were raised (22 questions) regarding the intraoperative phase: surgical technique (64%) and anesthesia (36%). s asked almost all of them, with being more concerned about anesthesia and focusing more on technique (Table 2). Of the 44 questions concerning the postoperative phase, white again raised the largest proportion (n 23; 52%), addressing recuperation period, functional recovery and limitations, and pain control. asked 27% of the questions (n 12), focusing on support after surgery, recuperation process, and long-term outcome. were concerned about QOL after surgery. asked no questions (Table 2). demonstrated the greatest amount of factual background information. Nearly all had researched TKR, had actively chosen their physician, and had researched other available options. They were generally more prepared to discuss TKR in terms of information already acquired. Additionally, because most were already actively involved in their own care, they tended to ignore many issues that preoccupied other focus group participants (i.e., trust of physician), leaving them more focussed on the procedure itself. Analyses of concerns by age group, use of assistive device, income, and activity level did not reveal informative patterns.

3 Patient TKR Concerns by Race and Sex 119 Table 2. Types of concerns (n 60) from focus group respondents divided by race and gender of respondents (n 37)* Preoperative concerns (n 60) No. concerns Types of concerns Lifespan of prosthesis Lifespan of prosthesis Finance Lifespan of prosthesis Device/technology Finance Options/alternatives Finance Timing of TKR Options/alternatives Trust in physician Options/alternatives Addiction to medications Device/technology Addiction to medications Employt Timing of TKR Employt Addiction to medications Trust in physician Employt Candidate for surgery Trust in physician Anatomy Drawbacks to surgery Intraoperative concerns (n 22) No. concerns Types of concerns Technique Technique Technique Technique Anesthesia Anesthesia Postoperative concerns (n 44) No. concerns Types of concerns Benefits from surgery Benefits from surgery Long-term outcome Long-term outcome Pain after surgery Recuperation process Recuperation process Recuperation process Function after surgery/ Function after surgery/ Function after surgery/ limits limits limits Quality of life after TKR Quality of life after TKR Methods of pain relief Support after TKR Quality of life after TKR * TKR total knee replacet. Figure 1. Preoperative concerns (n 60) from focus group respondents (n 37). TKA total knee replacet. Issues addressed by patient information materials. Table 3 shows a systematic review of information distributed by 3 academic joint replacet centers, the AF, and the AAOS. These docuts were taken from the organizations Internet sites and are meant to address patients operative concerns preoperatively. They are used in addition to time spent speaking with the physician and members of the health care team and are not meant as a replacet for discussion with a patient s physician. Altogether, participants raised 21 types of concerns: 11 pertained to the preoperative phase, 2 to the intraoperative phase, and 8 to the postoperative phase. Five (24%) were addressed by all 5 docuts: drawbacks to surgery; technique; benefits from surgery; function and limitations after surgery; and recuperation, recovery, healing, and postoperative therapy. Two (addiction to pain medications and physician trust) were not addressed by any of the docuts. Issues regarding candidacy for surgery, devices and technology, finance, jobs, lifespan of the prosthesis, other options, timing of TKR, anesthesia, methods of pain relief, and QOL after surgery were each addressed by 3 or fewer docuts. The AF docut was the only one that addressed job issues and timing of TKR. Three issues (definition of TKR, postoperative exercises, complications) were addressed by all 5 docuts but not by subjects. Issues raised by at least 1 docut but not by participants in our groups included: bilateral TKR (1 docut), diagnosis and evaluation of the knee (2 docuts), medical issues concerning Jehovah s witnesses (2 docuts), pathology (3 docuts), planning for TKR (4

4 120 Chang et al Table 3. Patient concerns by topics addressed in patient total knee replacet (TKR) literature Patient literature Concern A* B C D E Preoperative Anatomy Bilateral TKR# Candidate for surgery Devices/technology Diagnosis of arthritis/evaluation of knee# Drawbacks to surgery Finance Jehovah s Witness# Job Physician trust** Medications/addiction** Number of surgeries/tkr life Options Pathology# Planning for surgery# Questions to ask physician# Timing of TKR TKR definition# Intraoperative Anesthesia Technique Postoperative Benefits from surgery Complications# Exercises# Function after surgery/limitations Golfing and TKR# Long-term outcome Methods of pain relief Pain after surgery Quality of life after surgery Recuperation, recovery, healing, postop therapy Support after surgery * Literature from Virtual Hospital: Iowa Health Book. Available at URL: Literature from Rothman Institute at Jefferson. Available at URL: Literature from the Joint Replacet Institute at the University of California at Los Angeles. Available at URL: Knee_index.asp. Literature from the American Academy of Orthopaedic surgeons. Available at URL: 9&topcategory knee. Literature from the Arthritis Foundation. Available at URL: # Topic addressed in the literature but not raised by patients as concerns. ** Topics raised by patients but not discussed in the literature. docuts), questions to ask the physician (1 docut), and golfing postoperatively (2 docuts). DISCUSSION Our recent knowledge of factors accounting for variation in TKR utilization has increased, largely due to work done by the TKR Patient Outcomes Research Team, which focused on understanding the reasons for regional variation in TKR utilization (20). These factors include likelihood of receiving TKR (11), orthopedic surgeons and patients perceptions of indications and outcomes for TKR (21,22), patient predictors of physician referral for TKR (23), predictors of better physical function and other outcomes after TKR (24,25), and outcomes of staged versus simultaneous TKRs (26). These studies, however, have not analyzed the mechanisms underlying the differences, either from the physician or patient perspective. Our study has attempted to begin understanding these mechanisms by identifying themes underlying the decision-making process for TKR in patients with severe knee OA. Individual priorities and perceptions drive health care choice in any elective activity or procedure. For instance, Mancuso et al have recently shown that patients expectations of benefits of knee surgery are linked to their requests for treatt (27). Because and minorities underutilize costly health care interventions such as TKR (15,28), it is important to explore the concerns that may be delaying their decisions. Research also suggests that both race/ethnicity and gender are important in patients perceptions of costs and benefits in health care decisions (29 31). Evidence indicates these cultural differences are

5 Patient TKR Concerns by Race and Sex 121 deeply ingrained (32). Understanding cultural differences may be critical in interpreting subjective health-related data, such as outcomes of elective procedures. Our results raise some issues for consideration, both for counseling patients regarding TKR and the implications of not addressing these issues. With some overlap, different subgroups focussed on different phases of TKR and expressed different concerns. Wo asked the most questions about both the preoperative and postoperative phases and broached financial issues most frequently. White tended to raise process-oriented questions, addressing recuperation period, postoperative therapy, functional recovery and limitations, and pain control. African American, on the other hand, asked more practical questions, focusing on support after surgery, benefits of surgery, and long-term outcome. They also expressed concern over the criteria used for TKR and their own candidacy for TKR. Men raised fewer issues than. In all phases, the issues concerned practical aspects of TKR, similar to previous findings (22). White raised concerns that are easily answered by physicians and are the issues physicians classically tend to discuss (33,34). For instance, white asked questions such as, If you have a good knee cap, then what is a replacet, does that [the knee cap] stay in there and they just work underneath it? whereas white asked questions such as, Your friends who ve had it [TKR], did you see them recover quickly or what? This tendency of white American to speak the same language as their physicians is an important communication and rapport concept long understood by medical anthropologists in their study of doctor-patient relationships (35 37). This could contribute to their proportionally increased use of TKR. The structural support of and in this study does not counter that argut. Previous investigators have suggested that delay TKR because of lack of social support at home (22). Although this may still be relevant, 75% of both white American and had 1 or more others in the house; 50% of had someone else in the house, compared with 30.8% African American. Although all focus group members were at the same stage in the TKR process, white American s increased background knowledge concerning TKR may contribute to a greater proportion of this group choosing the procedure. For instance, 55% of their questions pertained to the intraoperative phase, focussing on technique. raised the fewest concerns (5 of 126 questions; 4%), the most common being finance. This topic was addressed in only 3 of the 5 patient information docuts. The other issues they raised included distrust of physicians, other treatt options, and surgical technique. Although s tend to have large potential supportive resources (38), it is well known that their medical informational networks are either less diverse or work differently than mainstream white Americans (39 41). This may affect the number of nonsurgical options with which s are familiar. Literature indicates s have a much wider view of health and medical care than their white counterparts (42), which might cause them to consider a more diverse range of health options in treating knee OA. That both and raised issues pertaining to physician distrust, more directly than the, is particularly notable. As tioned above, African American expressed concern over the criteria for and their own candidacy for TKR. Although this may be an information-gathering technique, it also reflects distrust of the physician. Depending on the quality of their relationship with the physician, may also be expressing distrust of their physicians when wondering whether they have been given all available options and alternatives to TKR. Expressed or implied, mistrust of the medical community is consistent with abundant medical literature describing mistrust among African Americans toward health care professionals in the aftermath of Tuskegee (43 45). Coupled with recent evidence that white Americans tend to know more people who have had TKR with better outcomes (46), this could contribute to the smaller proportion of TKRs performed in s. spoke the least during the focus groups and also raised the fewest issues. The reason for this is unclear. Sherman James et al have written on the relationship of powerlessness and stress in s and how the stress manifests as hypertension (47). It is possible that powerlessness is also associated with a certain sense of hopelessness that manifests itself in decreased verbalization. Combined with a distrust of the medical system, this scenario is certainly plausible. Second, this group of was very concerned about finances. Perhaps they felt TKR was not accessible to them. If so, it would be very important to address finances early with this population subgroup. Third, it is possible that do not want to 1) appear naïve in asking a question others may consider fundatal, or 2) to speak unless it is from a position of power. Given the age of the in the sample, it is important to consider that they lived through a time in this country when it was difficult, even dangerous, for to speak up. Finally, it is possible that our sample was not representative and included a group of who were not inclined to speak. Because white American have the most surgery proportionally, we had expected that the material handed out by TKR centers would address mostly white male concerns. To the credit of those developing the patient information materials, this was not found to be true in these 5 docuts. or asked the great majority of questions pertaining to the intraoperative phase; were concerned about anesthesia and focused on technique. Altogether, 64% (n 22) of the questions addressed surgical technique, and 36% were concerned with anesthesia. White tended to be more persistent about their concerns; although comprised only 33% of the white Americans, they asked 64% of the questions regarding the intraoperative phase. In this office, patients generally meet with an orthopedic nurse to address concerns after deciding to undergo TKR.

6 122 Chang et al In addition, they have the opportunity to discuss issues with the nurse at their appointt. According to focus group participants, their encounter with the orthopedic surgeon was brief, and many had no chance to think of questions during the visit (having just been told to consider TKR), so many specific concerns had not been addressed at the time of the focus group. However, all participants reported having a good understanding of why TKR was being recomded. Analysis of thematic content of patient information materials from 3 large TKR centers, the AAOS, and the AF reveals 50% overlap between expressed patient concerns in our groups and material intended as reference information for the same population, although material varied in their rates of correlation (Table 3). Qualitative studies such as this are limited in scope to the population being studied, in this case a university setting in an urban area. These data were obtained in the first phase of a larger study on race/ethnicity and gender variation in elective procedure utilization. Our patient population was a convenience sample; results are not generalizable to those patients with disabling knee OA who have never seen an orthopedic surgeon. Although that population is also important, locating and studying those patients will require a larger study. In addition, general limitations of focus group studies must be considered in relation to these results: 1) data are difficult to analyze, 2) groups are difficult to assemble, 3) researchers have less control over a group interview than an individual one, and 4) groups can vary considerably (19). The first 2 items are logistic issues, which were successfully managed in this study through application of analytic methods for qualitative data and recruitt efforts. Our use of a professional focus group moderator minimized the potential interviewer bias from participants responses and also addressed the third issue. The last issue is a potential asset for the current study where the objective is to bring out a spectrum of issues. Focus groups are the method of choice when the goal is to investigate complex behaviors and motivations, as in this case (19). Our statistics show that patients in this population tend to make a decision regarding TKR within 1 2 weeks after discussion with the surgeon (the minimum time necessary to recruit enough patients for a single focus group). Although focus groups with specific race/ethnicity and gender composition may have lead to more open discussion, it was not possible to structure them that way given this characteristic. Finally, in qualitative work, any exceptions found to current understanding are important. In this case, that patients asked questions not covered in their literature and not discussed with their physicians or not understood when discussed is a relevant and noteworthy finding. The importance of resolving health care disparities has recently been emphasized by the Healthy People 2010 objectives. TKR in OA is an important arena to investigate reasons for these differences because of the predominance of OA in aging populations, the high prevalence of OA among and minorities, the potential for increased QOL among TKR recipients, and the relative cost effectiveness of TKR. Our research reveals that different population subgroups have different concerns when making decisions regarding TKR. Moreover, materials currently distributed to patients considering TKR do not cover some issues of concern to and minorities in this study, such as candidacy for surgery, job issues, and physician trust. The physician s failure to discuss key issues may contribute to gender and race/ethnicity disparity in TKR utilization. Although it is likely that physicians and staff at the different centers addressed additional issues and concerns with their patients outside those covered by the education materials, it is possible that the absence of opportunities to address their concerns or the lack of satisfactory answers decreases utilization of TKR by and minorities. This research suggests that health care professionals should learn to recognize specific concerns relevant to and minorities and target them in discussions. Overall, we believe the implications of our results indicate the value of pursuing this information further, as the differences we have described may contribute to the gender and race/ethnicity disparity seen in TKR utilization. ACKNOWLEDGMENTS Special thanks to Rowland W. Chang, MD, MPH and Regina Bardon, RN for their assistance. REFERENCES 1. U. S. 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