To explore the experiences of diagnosis and management among patients who attended a specialist musculoskeletal pain clinic and the factors influencing their interpretation of these experiences.
To explore the experiences of diagnosis and management among patients who attended a specialist musculoskeletal pain clinic and the factors influencing their interpretation of these experiences.
A postal questionnaire was sent to potential participants 6–20 months after their first clinic attendance. Data were collected on pain presence, severity, and location; health-related quality of life; psychological distress; and care-seeking behavior. Questionnaire data were used to inform combined purposive and theoretical sampling. In-depth interviews were conducted that probed participants' understanding of their chronic musculoskeletal pain and its management in a specialist musculoskeletal pain clinic.
Fifteen patients were interviewed. Four main themes were identified: spoiled identity (pain limited patients' activities so extensively that it affected their sense of self); diminishing faith in medicine (patients were disappointed with aspects of their care-seeking experience); making sense of pain (patients made sense of their pain by locating their pain within the context of their lives); and learning to live with the pain (an issue for all patients was whether or not their pain would stop or whether they had to learn to live with it).
Developing, implementing, and evaluating approaches to address patients' spoiled identities might allow us to improve patient-centered outcomes in chronic musculoskeletal pain.
Chronic musculoskeletal pain has a major impact on individuals' health (1, 2). Patients with unexplained chronic musculoskeletal pain can be particularly difficult to help; they may follow a particularly complex “illness career path” (3), accessing a range of services before consulting specialist pain services (4). Conflicts between the explanatory models of illness used by patients and health professionals might contribute to this complex care-seeking career, increasing the likelihood of unsatisfactory outcomes for both practitioners and patients (5, 6). These problems may be particularly important for patients whose pain is difficult to manage and who are seen in specialist pain clinics. A number of studies have used a quantitative approach to measure pain clinic patients' beliefs and attitudes (7–9). However, studies of this nature may be based on the researchers' often narrow preconceptions about the important issues. Fewer researchers have used social-scientific interpretive qualitative methods to explore the patients' perspectives on their care, and their expectations of treatment (10–12).
In this study, we explored the experiences of diagnosis and management of patients with chronic musculoskeletal pain within a specialist hospital-based chronic musculoskeletal pain clinic and factors influencing the interpretation of these experiences.
We used an inductive, qualitative approach to capture patients' understanding about their lived experiences of chronic musculoskeletal pain and care-seeking efforts. A social-scientific perspective informed our analysis, namely social factors that impacted the nature of patients' relationships with biomedicine. In particular we drew on theories explaining how individuals whose lives are disrupted by chronic pain experience biographic disruption (13–15) and how they attempt to cope with their uncertainty about whether pain could be alleviated (16, 17). We used this perspective to avoid reporting patients' experiences and beliefs in an overly simplistic fashion, without locating these experiences within the broader social context of their lives.
Participants were patients who had attended a specialist hospital-based chronic musculoskeletal pain clinic. We have described this population elsewhere (18). We sent a postal questionnaire to potential participants 6–20 months after their first attendance at the clinic to obtain data on pain presence, severity, and location; beliefs about pain; health utility; psychological distress; and care-seeking behavior. We defined pain severity using the chronic pain grade (0 = no pain, IV = high disability/severely limiting) (19, 20).
To ensure that the respondents' clinicians did not know the participants' identities and that the interviewer only knew the identities of those wanting to participate, we mailed questionnaires from the pain clinic, and they were returned to a separate research center. We used these questionnaire data to generate a combined sampling strategy of purposive and theoretical sampling. Purposive sampling ensured that we included participants with a range of pain severity and demographic characteristics, and who had previously consulted a range of both National Health Service and private health care providers. Theoretical sampling was used to develop an emergent theory of how pain clinic patients fabricate an identity. This theory was indicated from coding and analyzing the initial few interviews (21). The logic behind theoretical sampling was to build into our sample those patients whose characteristics and traits would allow us to develop and explore our theory and explanation for patients' interpreted experiences. All participants had chronic musculoskeletal pain, which is pain that is present for most days during the previous year. An experienced sociologist (GH) conducted in-depth interviews until data saturation was achieved, i.e., no new substantive themes emerged. A topic guide that was created from issues raised during a series of patient focus groups that were conducted as part of a related study provided an adaptable structure to the interview (22). Questions probed participants' understanding of their chronic musculoskeletal pain: how they have approached its management; its effects on their daily lives prior and after attending the pain clinic; the barriers to the management of their pain; and their expectations of formal health care services for their pain. Interviews lasted 60–90 minutes; took place in the participant's home; and were tape recorded, transcribed verbatim, and anonymized. All interviews took place between November 2002 and March 2003. Ethical review was provided by the University College London/University College London Hospitals Local Research Ethics Committee.
We initially mapped the transcripts using a framework approach (23) to systematically disaggregate the qualitative data. Two researchers worked independently to chart the disaggregated data. We generated an index of pertinent issues and collated them to form loosely constructed categories of issues, which we examined to identify emergent themes. These themes emerged from a systematic process involving initial data reduction. This involved selecting excerpts of transcripts that provided our initial focus, assembling these data into matrices to identify the main direction of our analysis, and finally developing an analytical interpretation of these matrices by drawing on social theoretical perspectives of how individuals derive their identity. From this perspective, each theme partially illuminated our understanding of how patients in this clinic went about making sense of this experience, and their strategies for managing this experience. The themes that were independently identified were then discussed and differences of interpretation were explored by a third researcher (SP). A shared analytical interpretation of the themes identified was generated from these discussions (24).
We received responses to the questionnaire survey from 87 (72%) of 120 eligible patients; 62 (71%) of these were interested in participating in the interview study. After 15 interviews, no new substantive themes were emerging from the data. The characteristics of respondents and interviewees are summarized in Table 1. Four main themes were identified: spoiled identity; unmet expectations; making sense of pain; and living with pain/planning the future.
|All respondents (n = 87)||Sample interviewed (n = 15)|
|Age, mean (range) years||53 (25–86)||57 (29–71)|
|Male||24 (28)||3 (20)|
|Working||25 (29)||7 (47)|
|White||57 (66)||13 (87)|
|Persistent pain||82 (97)||15 (100)|
|Lower back||65 (75)||11 (73)|
|Shoulder||48 (56)||7 (47)|
|Hip/thigh||47 (54)||8 (53)|
|Neck||47 (54)||7 (47)|
|Knee||48 (53)||6 (40)|
|Care seeking in the last year|
|General practitioner||68 (79)||12 (80)|
|Hospital doctor||65 (75)||11 (73)|
|Acupuncture||18 (21)||3 (20)|
|NHS Physio||44 (51)||3 (20)|
|Private Physio||8 (9)||1 (7)|
|Osteopath||15 (17)||2 (13)|
|Mean (range) EQ 5D†||0.28 (−0.24–0.8)||0.29 (−0.24–0.73)|
|Psychologically distressed (GHQ ≥ 3)||57 (66)||10 (67)|
Unsurprisingly, pain limited many participants' activities, which in turn affected their sense of identity. Although this was the case for most interviewees, some believed that they should actively resist this process by negating their pain to preserve their self-identity.
However, the experience of chronic pain places irresistible demands on individuals to adjust to the limitations the pain imposes on them. The physical limitations that are adopted to adjust to chronic pain can cause patients to adjust their identity and perceive themselves as different from others. This form of adaptation was characterized by a sense of having “given in” to the pain and accepting the associated limitations. However, accommodating these limitations in a positive fashion enabled others to continue with their lives, albeit with a different approach. This positive sense of adaptation was exceptional for most; the life changes imposed by their pain were borne grudgingly, out of sheer necessity. Characteristically this involved a sense of having to lower their expectations of what, given their present condition, they could and could not do, and applied equally to employment prospects and leisure pursuits.
One participant was financially devastated by becoming unemployed due to her pain. In turn, her loss of employment necessitated a complete lifestyle change for her, including changes to her future life expectations. This situation was compounded for her because despite the disabling nature of her pain, she did not outwardly appear disabled; considerable frustration was created by the tension of changing her self-identity while her outward identity appeared unchanged. Balancing this tension was a preoccupation for many patients. One participant believed her health suffered, and described becoming exhausted as a result of having to balance pain and the need to keep working (Table 2).
|“… trying to fit in my needs in order to maintain my health at the same time as you know work routine can be difficult.” (UCL 32, female, pain grade II)|
|“I didn't realise at that time that I would be disabled and not able to work. I assumed I would be off work for a couple of months at the most, if that long and then I would be able to go back to work and carry on until I retired. But it turned out that I couldn't and so I've been officially disabled since 19-, I'm not sure if it was '94 or '95. I think it all started in '94 and then by the beginning of '95 I knew I wouldn't be able to go back to work again, or at the end of '94 I knew I wouldn't be able to go back to work… . Alternative health, like osteopaths and people like that. And that's why I ended up doing the, rang round some osteopaths, found they charged about £40/£50 an hour-totally out of my league because I was on benefits and was used to working …” (UCL 47, female, pain grade IV)|
|“ … I gave up work, I couldn't work any more for quite a few years … because of, at that stage I was doing office work and all that… . Whereas you know this, this is good because [working as a nanny] they're (children) at the age when I don't really have to lift anyone.” (UCL 78, female, pain grade III)|
|“ … it's changed my life dramatically … all my interests now, are changed, I used to be heavily, quite heavily sports orientated, and I just can't do that, well I say I can't, I used to be an expert level windsurfer and I used to do karate and all that kind of thing… . But there's no way I could even contemplate anything like that now, so, I've learnt to adopt different pastimes and hobbies.” (UCL 43, male, pain grade III)|
|“I've always been able to do everything and now this slowed me down, it didn't stopped me but it slowed me down, ‘cause I just done more swimming. I’ve always gone swimming but now I don't go swimming … I don't go dancing … I had to give up a lot of fun, enjoyment … Old before me time.” (UCL 125, female, pain grade II)|
A majority of patients expressed profound disappointment with aspects of their care seeking experience. Several patients reserved special comment for their general/family practitioners, whose inability to diagnose the cause of their chronic musculoskeletal pain was disappointing, and for some patients led to a partial loss of faith in their general practitioner's ability to understand their condition. Several factors contributed to this disappointment, including the perceived pressure on general/family practitioners' consultation times. Patients presenting with chronic pain wanted time to adequately express its effects on them. Several lamented the fact that general/family practitioners did not take their pain seriously and that they appeared not to care. For these patients the absence of any clear organic pathology to explain their pain made communicating their experience of chronic pain imperative in order to be taken seriously as a medical condition. As one patient put it: “It struck me that they didn't understand pain. Full stop. They would understand it if you've got toothache. But … I don't think that they understood pain. They understand what people are saying when they are in pain but … pain is so diverse and I think they tended to understand more when people were saying ‘I’ve got a frozen shoulder' or ‘I’ve got back pain'” (University College of London [UCL] patient 43, male, pain grade III).
Patients' unmet expectations marked their experiences not just with general/family practitioners, but also with medicine in general. Managing chronic pain was, for some, the result of having received a range of differing and sometimes contradictory opinions from the medical profession as to the cause of their chronic pain and associated treatments; what one specialist encouraged, another disagreed with. Other patients believed medicine could not provide a solution, only manage their pain relief.
Another patient (UCL patient 111, chronic pain grade II) reported that individuals turn to alternative therapies when mainstream therapies do not work. Some participants reported accessing alternative therapies not in search of a solution to their chronic pain but rather as part of their coping strategy; one patient resorted to a weekly massage as a means of dealing with tension; another prebooked an appointment with an osteopath prior to undertaking any manual work (Table 3).
|“Doctors don't know everything and they have to say something to me.” (UCL 111, female, pain grade II)|
|“I just assumed that because he was a doctor he knew what he was talking about and that would be that and it would all go away, and of course it didn't! … I suppose if you're bloody-minded enough you can make them give you time, it depends and again that, depending on how you're feeling yourself is how you relate to the professionals. If you're feeling, I mean if you've been in severe pain for a long time and you're feeling debilitated, depressed and all the rest of it you don't fight, you don't, you don't have the ability I don't think, to say ‘OK we’ve reached this solution hasn't worked, what's the next solution? What can we try next?” (UCL 47, female, pain grade IV)|
|“I was under a doctor and he kind of went ‘Oh yeah well it will get better,’ no one kind of took it serious, and I didn't to a point, its just maybe you've ricked your back… .” (UCL 53, female, pain grade data missing)|
|“I went to the doctor and I said like ‘I’ve got this pain in my chest you know I can't breathe,' and he told me I had a cold. Well I had no temperature, I had no symptom of a cold at all, he sent me home … you get the impression that they just really don't care.” (UCL 78, female, pain grade III)|
|“It struck me that they didn't understand pain. Full stop.” (UCL 43, male, pain grade III)|
|“ … about ten different ‘versions’ of what it [the cause of the pain] is.” (UCL 78, female, pain grade III)|
|“I just had years of trying to get things that really worked.” (UCL 32, female, pain grade II)|
A characteristic of most accounts was the detail participants included in their interpretation of their pain compared with their recollection of details provided by the medical profession. Whereas doctors were portrayed as simply making, or failing to make a diagnosis, patients, in recounting their understanding of the causes of pain, did so by locating the pain in the context of their lives—very much as a means of making sense of their pain. In this sense, patients perceived doctors as not helping them make sense of the pain, but only providing a medical interpretation for it. This was helpful for some participants who accepted the medical diagnosis, or explanation for their pain, and recounted this as an acceptable explanation. However, for most, there was a consistent tendency to not wholly subscribe to the medical interpretation.
One participant rejected a diagnosis of fibromyalgia on the basis that the symptoms did not match the diagnosis. Moreover, patients believed that the pain was, in some way, attributable to a previous surgical operation, and that the pain was the result of the body either over- or undercompensating for something undefined. Others drew on folk models of causation to interpret their pain.
One participant queried whether the pain was related to cancer that had previously been treated, although the initial diagnosis for the pain was fibromyalgia. For some, the onset of pain was sudden and wholly unexpected, as with one woman (pain grade I) who reported waking up one day a year ago with a sore arm that she decided was from sleeping badly. The medical diagnosis, however, was of a bruised tendon.
Although no doctor attributed pain to genetic factors, some participants felt that a genetic predisposition could partly explain their pain. By reflecting back to their earlier life and health-related experiences, they were able to make sense of their pain in terms of precipitating events such as a sudden, close bereavement (Table 4).
|“ … turned into calcium so instead of being nice and supple it's a hard mass … they say its like an arthritis …” (UCL 28, female, pain grade missing).|
|“ … what do they call it, work related upper limb disorders, um RSI.” (UCL 32, female, pain grade II)|
|“ … having diabetes has … weakened tendons and whatever … muscle tissue and stuff and that's what I understand … diabetes its such a pervasive illness … it does sound to me that something like diabetes would do that.” (UCL 111, female, pain grade II)|
|“Well it's like everybody tried to think it was something else, not what I've got. They all thought, you know they were working on a frozen shoulder and when I kept saying ‘The pain isn’t there,' they said ‘Oh but it is, but it goes to different places.’ But I didn't have a frozen shoulder and I was sure.” (UCL 113, female, pain grade I)|
|“Well, not trying to sound ungrateful, but they told me that it is fibromyalgia, but I don't honestly think that is totally correct, I think it was a bit of … diagnosis really … it's always difficult to explain your pain to somebody else …” (UCL 43, male, pain grade III)|
|“They used to think it was maybe a nerve. And now with the weather I think it could it be like any almost arthritis in me back or anything like that because … You know so I wondered if it's a form of arthritis … I have had it actually from a kid, when I was about 10 I used to get terrible, terrible back ache and me family used to think it was growing pains …” (UCL 53, female, pain grade missing)|
|“ … I think it's hereditary because my mum had it in the neck.” (UCL 66, female, pain grade IV)|
An issue for all patients with chronic pain was whether it would eventually end, leaving them pain free. For some, the pain clinic served only to provide them with coping strategies for dealing with the pain. Acceptance of living with the pain was an issue that resonated throughout many of the interviews. However, this was not necessarily a cause for despair. Some patients who had experienced chronic pain for a considerable time reported their pain threshold to have risen to accommodate the pain. One patient who held no expectation of a cure for her pain simply sought help with managing it and was disappointed that the clinic offered only a short consultation and a physiotherapist appointment. The notion of an increased pain threshold was reiterated by several patients, and with a perceived increased threshold came a sense of resignation to the pain; patients effectively accepted the pain as part of life for the foreseeable future.
This acceptance marked a significant point in the patient's chronic pain “career,” characterized by a sense of adaptation but on their terms. These terms also included “coming off” medication taken to manage pain, or developing coping skills. The idea of taking medication only for the symptoms of pain was, for one patient, considered to be harmful. She believed her 6 to 7 years of regular consumption of morphine and codeine were detrimental to her health. However, one patient (UCL patient 43, male, pain grade III) considered adaptation to be a temporary rather than a permanent state, and he remained steadfastly resolute in the belief that there exists a diagnosis for the symptoms experienced. He no longer attended the pain clinic, perceiving it to be only for patients who had accepted that they had to learn coping strategies from the pain clinic to live with their chronic pain. This perspective was notably absent from the other patients interviewed, all of whom recognized to varying degrees that the pain clinic represented the final source of formal health care available. However, this participant's sentiment that the pain clinic “didn't understand pain” (UCL patient 43, male, pain grade III) reflected similar sentiments expressed by other participants, which centered on their sense of disappointment that the pain clinic had not defined their pain. Others were more positive about the experience and found that the pain clinic provided what was required: a set of “coping tools and relaxation methods” (UCL patient 111, female, pain grade II) that have assisted with alleviating the pain (Table 5).
|“And I'm saying to her ‘Look you know you’ve got to understand I have a high tolerance to pain and for me to be able to come, you know to be on the phone crying, so you know I need tablets.” (UCL 78, female, pain grade III)|
|“I would prefer to be in pain than drowsy from medication, doesn't want to live life in a daze.” (UCL 43, male, pain grade III)|
|“I'm in terrific pain all over me, all over me, every part of me body aches and I don't take any painkillers because I'm taking enough medication. You know I just stand the pain.” (UCL 66, female, pain grade IV)|
|“ … the pills this doctor was giving me was just gonna mask the pain and at the same time change my life and that I really resented.” (UCL 111, female, pain grade II)|
Some themes were evident in all respondents with 1 notable exception. This participant's interpretation of his experience of chronic pain management was at variance with others and as such did not support our theorizing. Having undergone several operations that had unsuccessfully dealt with his pain, he regarded his situation as a consequence of consistent misdiagnosis by the medical profession. In the context of his experience, his expectations of medicine to manage his pain were very limited indeed, and he considered himself solely responsible for diagnosing the cause of his pain using whatever resources he had available. Such a deviant case serves to illustrate the complex ways in which individuals make sense of their pain.
For health professionals treating patients with chronic musculoskeletal pain in primary, secondary, or tertiary care, the mismatch of patients' expectations and services received could be quite chastening. The perceived failure of general/family practitioners to take individual's concerns seriously and to provide sufficient time to understand their problem is a recurrent theme in previous studies (25–27). However, the strength of participants' overall negative feelings about the diagnosis and advice they have received is quite surprising because it is far beyond that identified in previous studies. For many, the experience of the pain clinic was colored by past experiences of medicine's hitherto inability to satisfactorily resolve their pain, leading to a heightened, although possibly unrealistic, expectation of specialist pain clinic services. Indeed, the experience of the pain clinic brings into sharp relief these patients' need to accommodate pain if it cannot be completely alleviated, by making some sense of their pain and its effects on their sense of identity. Psychological coping strategies offered to patients with irresolvable pain clearly provide one mechanism for managing pain. Notwithstanding the appropriateness of these strategies in assisting with self-management of chronic pain, patients also actively sought an explanation that would account for their pain, not just strategies for coping with it. Equally important is patients' recognition that medicine needs to acknowledge their experience, and doctors need to bear witness to their experience, and that this experience has a profound impact on their functioning as social individuals, not least in terms of their sense of a spoiled identity. This in turn influences how patients adapt to an uncertain future over the resolution of their chronic pain.
In contrast with other qualitative studies of pain clinic patients, we selected participants after they had received some treatment at the clinic; most were selected after they had been discharged. Some of the patients were still undergoing treatment, or still had the opportunity to go back to the clinic. Additionally, the interviewer and those analyzing the data were completely independent of the pain clinic, therefore we would expect a narrative that is not biased by any unrealistically positive feelings patients may have when actually receiving the treatment. However, those who have completely rejected orthodox medicine might not even be included in this sample. Based on the distribution of chronic pain grade in this group, we were able to include some of the clinic's successes, and some of its failures. All were seen at least 6 months after the initial consultation. However, the high incidence of depression in those with chronic pain may have resulted in our participants painting an unnecessarily bleak picture (28). Overall, our data provide a realistic insight into the loss of trust in the medical profession in a group affected with chronic pain. Recognizing the importance of a spoiled identity experienced by this group might be one approach that would improve the care of these disenchanted patients.
Failure to address patients' sense of spoiled identity and loss of trust in the medical profession may be important factors that are not fully addressed in our current approach to treating chronic pain. If chronic pain treatment services do not address these issues, then poor outcomes and patient dissatisfaction will continue. Developing new ways to tackle these important issues will move chronic pain management forward from simply addressing pain and disability to being able to address the full spectrum of issues that impact patients' lives and self image. In doing this we need to carefully consider the changes necessary in our approach to patients, and how to objectively measure the effect of these changes to demonstrate that we are indeed achieving improved outcomes.
The authors would like to thank Emily de Leuil for charting the data and validating Dr. Harding's analysis. Special thanks to the staff at UCL rheumatology pain clinic for opening their work to analysis and of course to the participants who gave freely and willingly of their time.