Health Economics Research at Manchester (HERaM), School of Psychiatry and Behavioural Sciences, University of Manchester, Rawnsley Building, Manchester Royal Infirmary, Oxford Road, Manchester M13 9WL, 1Department of Social Medicine and 2MRC Health Services Research Collaboration, University of Bristol, Canynge Hall, Whiteladies Road, Bristol BS8 2PR, UK.
Correspondence to: C. Sanders. E-mail: Caroline.Sanders{at}man.ac.uk
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Abstract |
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Methods. In-depth interviews were carried out with 27 participants who had high levels of hip/knee pain and disability (according to New Zealand scores). There were 10 men and 17 women; median age 76 yr (range 5191). The data were analysed thematically using the constant comparison technique.
Results. Three types of barrier were identified: (i) people's own perceptions of need and reluctance to seek treatment, (ii) perceptions and experiences of primary care and (iii) experiences of treatment in secondary care. Pessimism about availability of treatments, and concerns about effectiveness and risks of surgery, made older people reluctant to seek medical help. Such views were often confirmed by GPs. Some of those referred to a hospital specialist were told that they were too young or too mobile for surgery.
Conclusion. Barriers to treatment and unmet need for joint replacement exist in the UK, particularly amongst older people.
KEY WORDS: Total joint replacement, Osteoarthritis, Unmet need, Qualitative research.
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Introduction |
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Participants and methods |
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The sample for the interviews in this study was drawn from the follow-up survey described above and comprised people with moderate to severe self-reported symptoms of pain and disability. They were considered eligible for the study if they responded positively to a survey question that they had been told by a doctor that they had either osteoarthritis or arthritis of the hip or knee. Candidates were excluded if they had reportedly been diagnosed with some other form of arthritis (e.g. rheumatoid or lupus). Sampling for the interviews was purposive and theoretically drivensuch non-probability sampling is common and appropriate for qualitative research [19, 20], where the aim is to sample in ... a stepwise way, including more data from one group or another dependent on what extra material is needed to answer the research question effectively [21: 485]. In order to investigate barriers to health-care utilization, we interviewed people with moderate to severe hip/knee symptoms (cut-off points of 43 and 55% of total New Zealand score [17]) and varying levels of health-care utilization (ranging from no contact to having had TJR). Sampling was conducted in three rounds (of 8, 18 and 20 respondents, respectively) and after each round data were analysed so that later interviews developed these analyses and allowed exploration of new issues arising. This method of iterative data collection and analysis is termed the constant comparison technique [22]. Three rounds were sufficient to reach saturationwhen no new themes were emerging [20].
Altogether, 46 people were invited by letter to have an in-depth interview and they were asked to return a consent slip in a pre-paid envelope. Of the first five candidates to be interviewed from the first round, four had worsening scores between baseline and follow-up (in at least one of their joints), and one had had bilateral total knee replacement (TKR) and had improved scores. All were in the older age group. In round two, more women were included, to reflect the greater prevalence of symptoms among women and to investigate any gender differences. Younger people were also interviewed because preliminary analysis indicated that the issue of age was important. We sought to include people with various comorbidities, as well as those without, because initial respondents talked about their experiences of arthritis in relation to their other illnesses (e.g. heart disease and diabetes). Ethical approval was granted from five relevant Local Research Ethics Committees (LRECs): Southmead Medical Research Ethics Committee, Frenchay Healthcare NHS Trust Research Ethics Committee, UBHT Research Ethics Committee, Weston Research Ethics Committee and West Somerset Ethics Committee.
In-depth interviews (carried out in people's homes by CS, with the aid of a checklist) were used to explore informants perceptions of their need for joint replacement surgery and their experiences of consultation with health professionals for treatment. Questions were open, allowing informants to discuss issues of importance to themselves about joint problems and treatment. All respondents gave written consent to be interviewed and all except two consented for the interview to be audio-taped. Recorded interviews were transcribed and detailed notes made for the two cases not recorded.
Transcripts were coded by assigning labels to segments of text in themes and then writing descriptive accounts based on these themes. Analysis was facilitated by the software package ATLAS/ti. Data were examined for similarities and differences between cases. Negative or deviant cases were identified and scrutinized carefully. The coding and analysis were discussed regularly at team meetings in order to refine and develop the analytical process.
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Results |
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For the 27 respondents, the worse affected joint was the hip in six and the knee in 21; 10 had both knee and hip symptoms. Table 1 shows NZ scores for the worse joint at baseline and follow-up. At follow-up 18 had severe symptoms (NZ score 55%), eight moderate (4354%) and one mild (<43%). Symptoms had worsened over the follow-up period in all but two people.
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Perceptions of need and reluctance to seek treatment
Most had experienced the pain and disability of arthritis for one or more decades and tended to perceive their symptoms as being inevitable and associated with normal ageing [23]. The predominance of this view of arthritis as a natural degenerative condition of older age made respondents pessimistic about formal care and this was a major factor in making them reluctant to seek care:
... to my mind nothing ever seems to happen where arthritis is concerned... All right, you go on a list, perhaps they think you have to have a replacement knee or something like that. I mean that's years, so I think to myself well, Im 73 now, there's not much point really and truly. (int. 24, female, age 72).
Most informants relied on over-the-counter medications, health food supplements, exercise and application of heat or cold to treat their symptoms, although most conceded that, at best, these brought limited relief. Respondents were often reluctant to seek care for joint problems, even when their symptoms caused severe disruption to their lives. Several assumed that they would not be considered as appropriate candidates for surgery because of their age and so had not even discussed the possibility of treatment with a doctor:
Well I think, I do think to myself I shall be 90 next year. Perhaps all that money they might spend on me could be done perhaps for a younger person. That's the way Im looking at it. Also, Im wondering if they put me on a list, it would be so long a wait, it probably wouldnt be worth it. I dont know if they do you when you get so old. ... this morning when I got out of bed it was so painful. I thought to myself, girl youre gonna have to think about something for your leg. I dont want to be kept in with my leg you know, I couldnt even go (on holiday) if this collapsed properly. You know that it may have to come to it. I would like some treatment on it if I could have it. (int. 23, female, age 89).
Four different respondents also mentioned how old age had been discussed as a reason for not undertaking surgery for some other condition and, consequently, they assumed doctors would consider them to be too old for TJR.
Some reluctance to seek treatment stemmed from perceptions of the risks and personal costs of surgery. Twelve respondents told stories about people they knew who had had joint replacements, but because many reported poor outcomes, particularly from knee surgery, they were fearful, or at least uncertain, about whether or not they should submit to having surgery themselves:
... to be quite honest, so many of my friends that I know have had, they havent been satisfactory. I mean one after 3 years her knee completely went again, and another one had never been free of pain since after going through with the surgery. So, I thought, well if I can manage without it, you know, I would. (int. 21, female, age 83).
A number of personal factors leading to reluctance to have surgery were also identified, such as weight (2 respondents), comorbidity (5 respondents) or caring commitments (3 respondents):
My neighbour next door had a knee replacement. Well, that was no good for her because she was too heavy, and that's what I feel now, Im a bit heavy for anything like that. (int. 5, female, age 91).
One man was caring for his wife who had Alzheimer's disease:
... if theyre going to do something like that, my wife, where is she going to be like, do you know what I mean? ... I wouldnt put her away or anything like, no. (int. 19, male, age 74).
These views were expressed by older respondents; the four youngest people were much more determined to get treatment. They were all of working age and three were in paid employment. Three had found it necessary to pay for a private referral to a specialist:
I went back and I said Im just not happy with it ... He gave me some tablets to take and said that should sort it out ... Because I am covered by BUPA at work, I said to my GP that I wasnt happy and he said well I think well put you through to a [private] specialist. (int. 25, female, age 55).
Perceptions and experiences of primary care
Respondents stated clearly that they did not want to bother GPs with symptoms for which they considered there was no appropriate/acceptable treatment:
Well, I dont see her (GP) about the joints because there's nothing she can do other than give me tablets, but I do see her because Ive got to keep going for blood tests, so I do see her regularly but not about the joints. Well Id just think why go to the doctor? She cant do no more you know, she might be able to change the tablets. No, I dont go because I dont think she can do anything herself you know. (int. 13, female, age 70).
For some, GPs seemed to reinforce the perception that nothing could be done:
Ive told him the doctor (about joint problems) and he said "well there's nothing really we can do about it", and well I just say it's something Ive just got to put up with and get on with. (int. 5, female, age 91).
And then the results would come back, and this is what I thought was pretty demoralizing at the time ... [GP said] "Oh yeah, you have a slight arthritis condition you know in your hips but it shouldnt cause the pain youre complaining about." More or less saying that youre pulling the wool over somebody's eyes or trying to. (int. 4, male, age 67).
Two had been referred for an arthroscopy, but neither experienced improvement or received any follow-up, and it would appear that they expected the GP to take the initiative:
No, I only had a note to go down to the surgery to see the nurse and to get the stitches out, and that was it ... No, I havent seen him [the GP] at all about my knee because I dont really know what would he do this time? ... I dont know if he remembers even recommending it cause it's such a long time ago, and it's a very busy practice. (int. 10, female, age 70).
Several reported that GPs informed them that they were not suitable candidates for surgery:
Yes, I went back to the GP, and then he sent me for an x-ray cause they thought then I would have been able to have had a hip replacement. But when I went and had the x-ray, they had the results back like, and I went back to the doctor, and he said that I had it in me knees and me hips and that they wouldnt touch me, well his exact words were they wouldnt touch me with a barge pole. (int. 3, female, age 82).
I was in agonies and um, I said to him [doctor] "what about me knees being done?", and he said "look Mrs X, if it was your hips I would send you in, but they dont do the knees much good, theyre not perfect with it." He said "youre wasting your money to have a specialist" ... Anyway, I couldnt go on any longer, and my son and I went over to see him, and he said "look mother has got so bad with her knees ... dont you think she should try the operation?" And he said [doctor] "She might not even come round from the anaesthetic because she's getting on in years". (int. 8, female, age 82).
Experiences of secondary care
The majority of the group had been referred to a specialist at some stage. Fourteen had been seen by a rheumatologist or orthopaedic surgeon since the baseline study, but less than half had been offered surgeryfour had received a TJR, one was on the waiting list, and one had refused it. Two had been told that TJR would be inappropriate because they had additional problems with their spine. Two had been seen and then discharged from a specialist clinic several years earlier. Four were under periodic review. A further four had been seen by a hospital doctor more than 5 yr prior to interview.
Some respondents talked about initial difficulties in getting a referral. As indicated above, four paid for a private referral. Others experienced problems with long waiting lists:
I said could you put me on the waiting list you know. And he said it's a long waiting list ... He said itll be a 12 month when hell do them ... So, I put up with the pain ... I knew something was being done. (int. 8, female, age 82).
Once respondents had actually seen a specialist, the majority seemed satisfied with their treatment. However, there were two who clearly felt that they needed TJR, but believed that they had been stalled from having the surgery because the surgeon considered them to be too young or too mobile:
He [surgeon] said I was too young to have it done ... but he said that was what I needed because it had gone too far. He said did I think I could manage and go on with it until I got older? So I said well yeah ... That was when I was 65 and Im nearly 70 ... Im sort of waiting for him to say Ill do it like you know. ... He probably thinks that by the time it's time for me to have it done Ill be dead, and thatll save them the money (laughs) ... They dont seem to bother with the old people these days do they? (int. 13, female, age 69).
I actually got as far as the pre-op assessment appointment which was two weeks before the operation, and on the day I saw a different consultant. Um, he was quite sharp with me and it seemed to me, I felt as if I had pushed myself to the front of the queue and he decided I had no right to be there ... he said I was still too mobile and too young, and I should go away and just wait ... I came away feeling very upset about that, and thought well ok Ill struggle on. (int. 16, female, age 56).
These informants had no clear indication of how they might be reconsidered for surgery.
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Discussion |
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There is considerable evidence that older people tend to perceive pain and disability as a normal part of ageing [2428] and this is perhaps unsurprising owing to the high prevalence of arthritic symptoms in older age and some of the cultural connotations of ageing as symbolizing a period of decay [29, 30]. The common perception that symptoms were related to ageing contributed to the informants feeling pessimistic about treatment and reluctant to seek help. This confirms findings of previous studies about seeking treatment in older age [31, 32]. More specifically, the findings are closely aligned to a recent Canadian study reporting that older people with severe arthritis were reluctant to consider TJR and assumed that their physician would advise them if they were appropriate candidates for surgery [11]. In our study respondents commonly made assumptions that they would not be considered appropriate candidates for surgery owing to their age, weight or the presence of other chronic conditions. This was the case even when they had not discussed these factors with a doctor, and highlights the communication gap between patients and doctors. Younger informants were, however, much more determined to get the treatment they felt necessary. This was demonstrated in requests for private referrals.
In previous work done on the subject of illness behaviour, Tuckett [33] refers to a three-stage process involved in the process of becoming a patient which comprises recognition (that there is a problem), definition (that it requires attention) and action (that they should consult a doctor). Similarly, Mechanic [34] and Zola [35] have highlighted the importance of recognizing symptoms and interference with daily life in triggering help-seeking. Although these informants tended to minimize the significance of their symptoms in the context of their older age, all had consulted a GP at some pointindicating that they had recognized that their symptoms were significant enough to seek formal care. However, in many cases their experiences of consulting a GP made them even more pessimistic. GPs often seemed to confirm that their symptoms were inevitable and untreatable and that they were not suitable for referral. Of course, we cannot be sure what actually occurred in these consultations. It may have been that the informants had milder symptoms when they consulted the GP many years previously, or that they presented their difficulties as relatively unimportant.
Age emerged as a consistently important theme, albeit in different ways in different circumstances. Most informants thought that it would be better to have surgery when they were younger and thus could recover more easily and gain more years of benefit. For the younger informants, this was also driven by the impact of their joint problems on their lives. Older informants tended to suggest that they felt too old for surgery and that younger people should have priority. GPs appeared to provide a barrier to both groupsthey did not refer older people because of comorbidity or younger people because they were not sufficiently disabled. Indeed, three out of the four youngest respondents paid for a private consultation with a specialist. For those who managed to obtain an orthopaedic consultation, several felt they had been refused surgery because they were too young or too mobile. The question about appropriate age for surgery is important because recent research has suggested that those who have early surgery have better outcomes than those who have later surgery when they are older with more severe symptoms [36]. However, surgeons have to offset this against the risk of prosthesis failure in younger patients.
The data also demonstrated that there was considerable concern about the outcome of TJR, particularly knee replacement. This was evident both from informants, based on their knowledge of previous recipients of surgery, and also GPs, who appeared to confirm that knee surgery was experimental or had poor outcomes. This is counter to recent evidence that TKR has become a very effective procedure [3, 3739].
This study shows that meeting unmet need may require several approaches. Information about TKR as an effective procedure needs to be disseminated among GPs and the public. There is also a need for information to counter prevalent lay beliefs that pain and disability are an untreatable and inevitable part of ageing, even when there are profound effects for people's lives. Amongst practitioners (in primary and secondary care), there needs to be a debate about appropriate indications for TJR, and particularly the importance (or otherwise) of factors such as age and obesity. Finally, this study demonstrates the need for an urgent review of referral practices for joint disease. The majority of these informants were ambivalent about surgical treatment, and it was clear that most had not had their potential need for surgery adequately assessed, nor the opportunity to discuss the risks and benefits. Many appeared to be waiting for GPs or specialists to initiate treatment if and when requiredsomething that is unlikely to happen. TJR rates, particularly TKR rates, are lower in the UK than in many other countries. This study provides clear evidence of perceived barriers to treatment at three levels. Thus, a concerted multidisciplinary approach is required to tackle unmet need for TJR.
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Acknowledgments |
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The authors have declared no conflicts of interest.
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References |
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