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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Objective

To explore patients' perspectives of need for total joint replacement associated with decision making in orthopaedic consultations for hip or knee osteoarthritis.

Methods

Twenty-six orthopaedic consultations in 3 UK hospitals were observed and audio recorded, and semistructured interviews were conducted with the involved patients and clinicians. Data were analyzed using thematic analysis.

Results

Two main routes to orthopaedic consultation were identified: patients who waited until their symptoms were no longer bearable (holding off), and patients who sought consultation preemptively (before it gets worse). These routes were mediated by age, comparison with others, demands and desires, deterioration, and convenience. Whether patients had held off or sought help preemptively influenced their perceptions of need. Patients' perceptions of their route to orthopaedic consultation, and consequently their perception of need, were either confirmed or contradicted by clinicians.

Conclusion

When clinicians and patients have differing perceptions of need there may be ongoing patient anxiety, concern, and feelings of disempowerment. It is important for primary and secondary care clinicians to identify and explore a patient's perception of need in order to provide consistency in referral pathways and to support patient involvement in, and understanding of, shared decision making. Exploring the patient's perspective of their route to consultation is proposed as one easily achievable method of identifying patients' views on urgency of their need.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Total joint replacement (TJR) conducted for osteoarthritis (OA) is one of the most common elective surgical procedures (1), aiming to relieve pain and improve function. Patients' journeys to TJR are complex. Primary care is usually a patient's first option, but many people do not want to “bother” their general practitioners with joint pain (2), and knowledge about the availability of appropriate help limits help seeking (3–5). Patients tend to seek help for pain rather than for “osteoarthritis” (6–8), and the time to diagnosis may be many years (9). Referrals to secondary care may result in disparities along the lines of sex and age (2, 3), and difficulties in referral and treatment decisions are compounded by the potential mismatch between patients' reports of pain and radiographic evidence (10).

There is a lack of consensus about who will benefit from TJR, and there is evidence that rates of TJR vary in association with age, sex, ethnicity, and social class (11–14). Recent guidance aims to reduce barriers and to support patients' routes to TJR (15, 16). In the UK, current recommendations state that patients with hip or knee OA who are not benefiting sufficiently from conservative treatments should be considered for surgery. It is also recommended that factors other than joint disease (such as age, sex, smoking, obesity, and comorbidities) should not be barriers to referral for TJR, and that decisions on referral thresholds should be based on discussions between patients and clinicians rather than current scoring tools (15).

Discussion is a key component of the shared decision-making model, within which the clinician provides medical information and the patient conveys his or her preferences (17). This model has been advocated as the ideal in TJR (18). People living with joint pain hold personal views that affect their perceptions of need for surgery (19). These views include both medical and social elements. However, patients only raise approximately half of their concerns with their consulting orthopaedic physicians (20), which may have a deleterious effect on the decision-making process. In addition, decision making about TJR takes place in the context of patients' and clinicians' views about need and urgency, but these are not well documented. This study aimed to examine patient perspectives and experiences of decision making for TJR in secondary care.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

This qualitative study comprised observation and audio recording of orthopaedic consultations, followed by interviews with clinicians and patients. Data were collected from 3 hospital sites within 2 British National Health Service (NHS) Trusts. The appropriate Local Research Ethics Committee and NHS Trust Research and Design offices approved the study.

Sample.

Clinicians were purposively sampled to include a range of years of experience and those who specialized in hip and/or knee surgery. Seven clinicians were approached and 4 surgeons and 2 extended scope practitioners (ESPs) provided written consent to take part.

Patients due to see participating clinicians were purposively sampled to include a balance of sex, age, and hip and knee OA. Potential participants were identified from NHS clinic lists by nonclinical staff and were sent a letter of invitation and a study information booklet 2 weeks before their scheduled appointment. Potential participants were asked to return a reply slip to indicate if they were willing to be contacted by the researcher prior to their outpatient appointment. Seventy-seven patients were sent the booklet, 34% (26 patients) returned the reply slip and agreed to see the researcher about the study, and all of these patients provided written consent to take part (Table 1).

Table 1. Summary of patient characteristics (n = 26)
 Men (n = 12)Women (n = 14)
Hip jointKnee jointTotalHip jointKnee jointTotal
Age, years      
 <50000112
 50–59112011
 60–69336224
 70–79022325
 ≥80112112
Total57127714

Data collection.

There were 4 stages to data collection. First, the outpatient consultation was observed. Observation entailed the researcher sitting as unobtrusively as possible in the consultation room and taking notes about patients' and clinicians' positioning, physical presentation, and the clinic environment while audio recording the appointment. Second, the researcher interviewed the clinician immediately following the appointment about the decision that was made. Due to the nature of clinical commitments, these interviews were brief. Third, the researcher conducted an in-depth interview about the consultation and the decision with the patient as soon as possible after their appointment. This took place between 1 and 21 days after the appointment. Finally, an in-depth interview about general decision making was conducted with each clinician toward the end of the study. These interviews lasted between 20 and 60 minutes each. With consent, all of the consultations and interviews were audio recorded.

One of the authors (AS) conducted all of the data collection, except 2 observations and 2 brief clinician interviews, which a second author (JH) conducted.

Qualitative analysis.

Audio recordings of the interviews and consultations were transcribed and anonymized. Transcripts were transferred to the qualitative analysis software package Atlas.ti (Scientific Software Development), and data from the consultations and interviews were analyzed together. Notes taken during observations were used to enhance interpretation of the transcribed consultations. Using thematic analysis (21), a sample of the transcripts was read and reread, and 2 authors (AS and RG-H) independently assigned “codes” to portions of the transcripts reflecting themes that emerged from the data. These code lists were compared and a consensus about the coding frame was reached. The rest of the data set was then coded and the coding frame was modified and refined as data collection and analysis progressed. Key themes were identified from the codes, and cases and themes were compared within and between one another using constant comparison techniques (22). Descriptive accounts were produced that were developed to arrive at theoretically informed findings (21). All of the names are pseudonyms.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Two main routes to orthopaedic consultation were identified: route A and route B. Route A patients waited until their symptoms were no longer bearable, i.e., holding off. Route B patients sought consultation preemptively, i.e., before it gets worse.

The characteristics of route A and route B patients were compared by age, sex, affected joint, and treatment decision (Table 2). Of the 26 patients, 20 were listed for surgery. The 2 groups displayed no differences, with the exceptions of route B patients comprising proportionately more people with knee pain and route A patients comprising proportionately more people listed for TJR. The analyses highlighted several factors that mediated patients' decisions: age, comparison with others, and demands and desires. Route A was also mediated by deterioration, and route B was also mediated by convenience.

Table 2. Patient characteristics and timing routes to orthopaedic consultation (n = 26)*
 Sex, no. (%)Age, yearsJoint, no. (%)Listed for TJR, no. (%)
MaleFemaleMeanRangeHipKneeYesNo
  • *

    TJR = total joint replacement.

Route A: holding off (n = 17 [65%])8 (47)9 (53)68.448–869 (53)8 (47)14 (82)3 (18)
Route B: before it gets worse (n = 9 [35%])4 (44)5 (56)69.346–863 (33)6 (67)6 (67)3 (33)
Total12141214206

Route A: holding off.

Seventeen patients had followed route A to their orthopaedic consultation. These patients “held off” for as long as possible before seeking surgery and saw this route as an expected norm:

Mrs. Darcy: “Well, you know, I've been holding off for as long as I can… . We're all hovering on the brink. … well the two men [brothers-in-law] and my sister are trying to hold off” (postconsultation interview, age 63 years, right hip, listed for TJR, route A).

Patients described coping with their symptoms for as long as they could until a gradual accumulation of events or crisis compelled them to seek further help. At this point, patients believed their symptoms were bad enough to warrant orthopaedic intervention:

Mr. Adler: “I made the decision, well it's a conscious decision, to carry on walking as long as I could before being forced into taking action” (postconsultation interview, age 77 years, both knees, listed for TJR, route A).

However, even when a patient reached this point, some questioned whether the secondary care clinician would agree and were surprised when he or she did:

Mrs. Lee: “Well yes I think I was expecting to hear, but I didn't know whether it—it would be a case of now or, ‘Well we’ll see in a year's time,' sort of thing. I mean I knew there's something radically wrong” (postconsultation interview, age 79 years, left hip, listed for TJR, route A).

People in the route A group perceived their need for TJR as urgent. They had held off until the point at which they were no longer able to wait and had a pressing need for intervention.

Route B: before it gets worse.

Nine patients had followed route B to their orthopaedic consultation. These patients sought intervention “before it gets worse”:

Surgeon B: “So, you know, being fit and well and 63 is in your favor.”

Mrs. Armstrong: “Yes that's why I thought I'd come and get something done about it, yeah, rather than hang on and suffer” (consultation, age 63 years, right hip, listed for TJR, route B).

Seeking intervention before the condition worsened was linked to perceptions of being young and well enough to recover quickly, and a desire to avoid further deterioration:

Mrs. Crow: “And the best thing is to do it now, while I'm OK in myself. If you just get on with it and you get weaker and weaker you're going to take longer to get over it anyway, aren't you?” (postconsultation interview, age 67 years, right knee, listed for TJR, route B).

People in this group saw their need for intervention as high but expressed less urgency. Perceptions of need arose from fear of further deterioration and the implications of this for abilities and quality of life.

Mediators.

Route A patients believed that a person should reach a certain age before considering TJR:

Mrs. Darcy: “So I got to the stage where I thought, well this is ridiculous. I was thinking I'd try and hold on till I'm 70 or something but I thought, well I can't sit around for seven years” (consultation, age 63 years, right hip, listed for TJR, route A).

However, route B patients acknowledged that they did not want to wait until a certain age and would rather undergo surgery swiftly:

Mrs. Armstrong: “Why do it when you're 70 if you can have it done when you're 60? At least that's my attitude” (postconsultation interview, age 63 years, right hip, listed for TJR, route B).

Knowing at what age it is appropriate to request treatment was both aided and confused by comparison with others. Patients compared their age, symptoms, or circumstances with others before seeking care and during the consultation process:

Mr. Johnson: “But quite honestly, when you're sat in that waiting room, as I was, and you see the state of some of the people that are coming in and out, there's an awful lot of people that are an awful lot worse off than I am. You know, so I can understand him saying to me what he did” (postconsultation interview, age 63 years, right knee, not listed for TJR, route B).

Demands and desires were linked to age and life stage. In general, younger patients expressed higher demands and desires than older people. All of the patients expressed a general desire to “get back to normal,” but route B patients also tended to have explicit desires and demands for their lifestyle and quality of life:

Mr. King: “I sort of wanted to get back to playing golf and things (laughs) like that, you know. So I'm restricted…putting it off another six months, alright, but I'm a bit disappointed in that” (postconsultation interview, age 68 years, left knee, not listed for TJR, route B).

An additional mediator of route A was deterioration. Some patients reported experiences of (often rapid) deterioration. This influenced the time they were willing to wait for surgery. Deterioration could occur while patients were waiting for an initial consultation and also once they were on the surgery waiting list:

Mr. Morris: “The quality of me life is going—gone—downhill quite badly in the last few months like, you know, with this immobility” (postconsultation interview, age 66 years, right hip, listed for TJR, route A).

Convenience was a mediator for route B patients, influencing when they sought treatment and how they reacted to waiting times:

Mrs. Miller: “I'm a little bit shocked, it's been a bit of a rush. Because there's two members of my family [who] will be abroad” (postconsultation interview, age 82 years, left knee, listed for TJR, route B).

Congruence and incongruence in decision making.

Patients' experiences of orthopaedic consultations were influenced by the extent of congruence between their own perceptions of their need for surgery and the clinicians' perceptions of the patients' needs. When there was high congruence, patients perceived the experience as positive. Conversely, where there was low or no congruence, patients viewed their experiences as less positive.

Congruence occurred for individuals in both routes A and B. In these cases, clinicians agreed either that patients did not need to wait any longer, or that it was acceptable that they should undergo TJR before further deterioration:

ESP 1: “This has been going on for ten years. He's coped very well for that time, but he reports that, since September, his life isn't happy” (brief interview following consultation with Mr. Adler, age 77 years, both knees, listed for TJR, route A).

Surgeon B: “Well she's got bad arthritis on the x-ray. And we could delay, but it's not going to get any better” (brief interview following consultation with Mrs. Armstrong, age 63 years, right hip, listed for TJR, route B).

Six patients were not listed for TJR: 3 route A patients and 3 route B patients. The common theme among those not listed for TJR was an ongoing anxiety about symptom management.

Route A patients not listed for TJR questioned their ability to continue to cope with the pain and decreased function that had led them to seek orthopaedic consultation. The reasons given by clinicians (directly to the patients and during the brief postconsultation interviews) for not listing these patients for TJR included: misdiagnosis of pain origin, inadequate severity of symptoms, and diagnosis not appropriate. The alternatives to TJR recommended by clinicians included an appointment with a different specialist (when the origin of pain was identified as coming from the patient's back rather than her hip), to return should symptoms worsen, and to increase pain relief medication. Although alternatives were offered, patients expressed anxiety about their futures:

Mrs. Irwin: “Yeah, been a long time coming this… . So I can fight it for now, well I will do, I'll fight it for now, but I can't take much more of it, to be honest” (postconsultation interview, age 55 years, left knee, not listed for TJR, route A).

There were also differences in opinion between clinicians and patients. For instance, Surgeon D did not recommend surgery for Mr. Harris:

Surgeon D: “I mean I don't think he's got severe arthritis in his knees. I think he's young and I think his main problem is his tendency to form new bone. And that tendency persists after knee replacement” (postconsultation interview, Surgeon D).

However, Mr. Harris was clear that he had wanted TJR and that he disagreed with the decision:

Mr. Harris: “And I thought he would say, ‘Well you’ve been in enough problems,' you know, I thought he would say, ‘Right, let’s get—as you've been in and out a long time, have it.' But he didn't… . He said it's not warranted. But…what does he count as warranted and up to what I count as warranted?” (postconsultation interview, age 54 years, both knees, not listed for TJR, route A).

Route B patients not listed for TJR expressed similar concerns about their futures. The reasons given by clinicians for not listing them included inadequate severity of symptoms and diagnosis not appropriate for TJR. The recommended alternatives to TJR consisted of increased pain relief medication, strengthening exercises, and referral to another specialist. Patients in this group also expressed anxiety and disappointment:

Mr. Johnson: “What I am concerned about is obviously it's not going to get better, it's going to get worse and worse and worse …what I don't want is to find myself in the situation in five years' time where I'll be a lot worse than I am now” (consultation, age 63 years, right knee, not listed for TJR, route B).

Perception of need was also related to perception of urgency and waiting time for surgery. During this study, clinicians were working to a new 18-week patient pathway; the guarantee that patients would receive treatment within 18 weeks of their outpatient appointment was introduced in the UK in 2006 (23). The patients in this study waited between 2 and 18 weeks from their consultation to surgery. Four patients (all route A) opted to have private surgery: 3 who did not want to wait a possible 18 weeks, and 1 who wanted a bilateral knee replacement, which was not offered by the NHS clinician.

For these patients, although the clinicians agreed that they should be listed for TJR, their perception of the urgency of their need was not matched by the clinicians' prioritizations. Because these patients had held off from seeking help in the first instance, they did not want the added wait for surgery:

Mr. Adler: “And I think for me at the moment, if there is an opportunity to go private, which I can speed up that process and get on with my life, well that's, you know, that's the motivation” (postconsultation interview, age 77 years, both knees, listed for TJR, route A).

Mr. Edwards: “But, you know, when you're thinking of months of pain it's not an easy decision to take” (postconsultation interview, age 86 years, left hip, listed for TJR, route A).

Movement between routes.

We found some evidence of movement between routes. Two patients who initially presented as following route B were not offered TJR because their symptoms were not deemed severe enough by the clinicians. The decision made at these patients' consultations was that these patients should hold off until their symptoms worsened, i.e., adopt route A:

Mr. Johnson: “I'm in no rush to have it done…if this suddenly flares up and, you know, I find myself in a couple of years' time sort of really struggling. … Hopefully I can go and contact my doctor and say, ‘I want help, you know, can we get something sorted here? Because I’m really struggling'” (postconsultation interview, age 63 years, right knee, not listed for TJR, route B).

Mr. King: “I can't keep going along and saying, ‘Look, it hurts, do something about it.’ So I'll just have to go with his [Surgeon E] recommendation [to increase use of painkillers]” (postconsultation interview, age 68 years, left knee, not listed for TJR, route B).

In both of these cases, the shift to route A was the result of decisions that were driven by their clinicians. Conversely, there was no evidence of patients moving from route A to route B. This is to be expected, since those who had already held off until their symptoms were no longer bearable were unlikely to be able to shift perspective and see surgery as a solution to symptoms before they worsened.

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Two routes to orthopaedic consultation were identified. Each route was mediated by factors that give a greater understanding of patients' decisions about when to seek intervention and their thoughts about urgency and need. The majority of patients in our sample were listed for TJR and their perception of need was thus matched by the clinician's perception. However, some patients left their consultations feeling anxious about how they would manage their symptoms and the suitability of the treatments offered to them. In these instances, patients believed that TJR would improve their quality of life, but thought that clinicians did not share this view. The consequences of this mismatch were ongoing patient anxiety, concern, and discontentment. Two incidences of movement from route B to route A were identified. One implication of this movement is that patients may feel discouraged from seeking subsequent consultations should their symptoms worsen before followup is scheduled or deemed appropriate. Further research could explore this issue.

Patients contribute to shared decision making by telling the clinician their preferences (17). One element of preference is whether a patient chooses to wait until they cannot hold off any longer, or whether they prefer to receive treatment before their condition gets any worse. Similar variation has been identified in help-seeking trajectories in other conditions (24, 25). In the case of TJR, it is particularly clear that people's decisions about when to seek help are grounded in complex factors. This study indicates that failing to acknowledge patients' preferences in the decision-making process may leave patients feeling anxious, discontented, and disempowered.

There is evidence of inequity in the provision of TJR (2, 3, 11–14). Patients' perceptions of knee pain are known to be important predictors of consultations and referrals (3). However, previous research suggests that clinicians do not incorporate psychological factors into decisions about prioritization for TJR (26). Furthermore, patients have views on acceptable waiting times (27), and exceeding these impacts patients' quality of life. In our study, patients identified distress linked to the timing of the intervention as a key element of the process of decision making with a potential impact on quality of life. Given that psychological well-being has the potential to affect the outcome of treatments for OA (28), our study raises further questions about the future impact of clinicians' decisions not to offer, or to delay, surgery (and thus extending waiting times for surgical treatment).

The study had some limitations. It was based in one location and included a relatively small sample of patients and clinicians. However, strengths of this study were the inclusion of in-depth patient interviews, clinician interviews, and observations of outpatient appointments. In particular, by interviewing clinicians immediately after observed consultations, we accessed their reflections about specific instances of decision making that the researcher had been privy to and therefore could probe. In addition, information gleaned from direct observation was used to inform subsequent interview questions. This approach provided a window into actual rather than hypothetical behaviors. Subsequent in-depth interviews with clinicians focused on more general terms about decision making and their approach to practice. We will report more detailed data from the clinicians elsewhere; the analysis presented here includes both patients' and clinicians' viewpoints, but focuses more on patients because we aim to examine their pathways through care. The sample size reflects the qualitative research design, and percentages are included (Table 2) solely as a means of adding clarity to the data presentation. However, a weakness of the study is its inability to provide findings that may be generalized. Future research could employ quantitative methods to examine the relationship between patients' characteristics, the route they adopt, and treatment decisions. In addition, this study focused on secondary care. Future research might examine patients' full trajectories through care from the onset of OA.

Fuller shared decision making about TJR could be enhanced by providing patients with opportunities to express their perceptions of need. Eliciting patients' descriptions of their route (e.g., route A or route B) could be a straightforward way to do this during consultations. It has been suggested that asking open-ended questions near the end of consultations would enable unspoken concerns to be discussed and addressed (20). Acknowledging patients' views of need and urgency, and dealing with the issues that arise from those concerns, would present another concrete way of improving communication in orthopaedic consultations. Any discordance between a clinician's and a patient's perception of need could be addressed in more detailed discussion. Improving patients' experiences of their trajectories through TJR might serve to decrease distress, and in doing so may have the potential to positively affect satisfaction and outcome.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. Dr. Gooberman-Hill had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Sansom, Donovan, Sanders, Dieppe, Horwood, Learmonth, Gooberman-Hill.

Acquisition of data. Sansom, Donovan, Sanders, Dieppe, Horwood, Learmonth, Williams, Gooberman-Hill.

Analysis and interpretation of data. Sansom, Donovan, Sanders, Dieppe, Horwood, Learmonth, Gooberman-Hill.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES