Patterns and descriptions of need
Among responders, 4035 (93%) answered the KNEST knee pain question. The 12-month period prevalence of pain "in or around the knee" was 1999/4035 or 49.5% (95% Confidence Interval 48.0% – 51.1%). In this group of knee pain sufferers, half reported severe knee pain and disability. Mean WOMAC scores for all KNEST survey responders with knee pain and the interview sample are shown in Figure 1.
As might be expected the mean WOMAC scores from our population data are lower than those reported from other studies where patients have a diagnosis of osteoarthritis and are awaiting referral for physiotherapy or knee arthroplasty or attending hospitals clinics [12–14].
Felt needs can also be described by investigating individual WOMAC items. Twenty five percent of survey responders with knee pain reported severe or extreme pain going up or down stairs, 12% reported severe or extreme pain standing and 11% had severe or extreme pain walking. The activity causing the most difficulty with physical functioning was heavy domestic duties with 30% reporting severe or extreme problems. Twenty eight percent reported severe or extreme difficulty bending, 24% getting in and out of bath, 19% getting up stairs and 18% had severe or extreme difficulty getting in or out of a car. These data show the impact of pain and disability on everyday activities.
The interviews and diaries offered compelling fragments of people's experiences that resemble what Radley [15] defines as first-person accounts that display the author's pain, and thereby induce the reader to appreciate the world of his or her suffering by 'making it present again.' Most people talked about knee pain in relation to specific activities such as being still in one position for some time, going up and down stairs or walking. The qualitative data, therefore, underpins the survey results.
"I mean, if I sit too long, that doesn't help either. But the worst part is if I'm asleep and my legs are bent and I haven't woke up, the pain, I can't tell you what it is like. I can not move it...and what I do is I grip both hands round the knee and try to force my leg straight and I break out in a hot sweat. All I can say is that it is a bony pain. I could shout out with the pain." (Heather)
The level of pain ranged from what was described above as discomfort, to severe pain that stopped people from undertaking many of their normal daily activities.
"When it first happened [knee pain], I couldn't put weight on my foot. It was horrible. I can't tell you what it was like. Really really severe....painful; absolutely painful. I used to walk a lot, that stopped me from walking, but now I'm walking again so that's better isn't it?' I thought I'd be a cripple for life. I couldn't see it going. I couldn't see what would make it go, but physio helped and those tablets helped." (Susan)
In common with other musculoskeletal pain [16] many people explained that the pain was not a constant phenomenon, and that fluctuations occurred even though these could not always be explained. Coping with these ups and downs depended on a number of contextual factors such as social support, access to services and psychological well-being. The interaction of the latter two is illustrated by the following quotation:
"...if I'm 54 now, another 10 years, you know, am I going to be back to square one? Is it worth going through all that? It depends on how you feel: oh, yes, again, with me 'down' a bit. I'm going to go [to the doctor] and another time I say: Oh, I can cope with it." (Heather)
Sanders and colleagues [17] reported that older people with knee pain minimised their suffering because they accepted it as part of normal ageing. Our study reinforced this finding and the excerpt below from one of the diaries is representative of this approach:
"Had some pain and stiffness in my knees later in the day when squatting/stooping down for a short while looking in a low cupboard – pain was around the knee joint. This faded away when I stood up and flexed the joint – getting erect was a struggle. I find this frustrating at times, but accept it as one of the disadvantages of growing old." (Peter)
While pain was clearly a feature of everyday living for this person – and many others in our survey – redefining it as 'frustrating' and as an inevitable part of the ageing process meant that pain was 'downgraded', and consequently turning felt need into expressed need did not happen. Thus, when asked in the epidemiological survey, people did report knee pain, but the interviews and diaries explained that the existence of this pain was not necessarily acknowledged as a symptom of illness. The mediating influence of cultural concepts of ageing and interpretations of the thresholds for presenting to health professionals (i.e. fluctuating and intermittent pain did not warrant consultation) appeared to suppress the acknowledgement that the pain experience need not be borne.
Health care use
Among responders with knee pain (according to the KNEST knee pain screening question), 33% (n = 630) reported visiting their GP about this in the last 12 months. In the group with severe pain or physical functioning over half had not consulted a GP in the last twelve months about their knee problem (53% had not consulted a GP). There was a considerable group of people with felt need who did not consult their GP in a 12-month period and might have potential to benefit from advice, treatment and preventive strategies. Furthermore, one in ten survey responders with severe knee pain or disability had not consulted a GP in the last 12 months about their knee problem and had not used medications (prescribed or over the counter), aids or self management (exercise, heat, cold, bandage or knee support, walking stick or creams or sprays) or home remedies for their knee pain in the last two weeks.
The interviews and diaries illuminate some of the reasons why people did or did not express their health care needs. Pain intensity, perceived high impact on daily life were the most cited reasons for consultation. For example:
"I think they must have been.. they must have been really painful then. I think that's why I went and, erm.. any way, she had.. they had a look at them, you know, and she sent me for an x-ray." (Jenny)
Very painful.. couldn't put weight on it. I couldn't put weight on it. I went to the doctor and he gave me some pain-killers and then I went to my son. He's got a practice in Crewe and had about 12 sessions of physio on it and even then it didn't 'go.' (Susan)
Pressure from family members also had an influence on the help seeking behaviour of some participants:
"So, obviously it was pressure from my wife.. we might as well say that, erm... it was the final push to go down, obviously to see him, 'cos it was getting no better. She said, 'look,' you know, 'you don't know what you've done,' or whatever.. you know, 'you need to go.' So, 'all right, I'll go then!' So.. off I go. ...and my daughter as well.. 'cos they kept working on me, didn't they, as well." (David)
During the interviews, more reasons were given for not consulting health care rather than for consulting, and this reflects findings of other studies [18]. Our study reinforces the contention that help-avoidance represented a complex phenomenon: expectations of treatment were shaped by ideas about effectiveness, by the threshold limit that needed to be reached before consultation was justified or by notions of being a deserving case – in comparison to others with more serious health problems. The most prominent sentiment expressed explaining help-avoidance contained negative judgements of effectiveness:
"I haven't been to the doctors about it because I can't see any point, they can't operate and all they'll say is we'll give you ...I mean, we've got some fine doctors, so no, there's a limit to what they can do. Well, I mean, ...I don't even go to the hospital now. I mean, it's just, ...I take it that there's nothing you can do about it. I ...all I go to see him is ...well, I don't really go for anything bar my ... six monthly check-up. No, I never say anything. As I say, there's not a lot of point. All he could do is give me another painkiller and that's it." (Roy)
The interpretation that there was a limit to what can be done about the knee pain appeared to be linked to an implicit notion of cure, symbolised by an operation. Within that context giving medication seemed to be viewed as inferior treatment, and almost dismissed by using the words "all he could do is give me another painkiller." Continuing consultation, therefore, was deemed to be of little value as no effective curative treatment could be offered.
Lack of effectiveness was reinforced when knee pain was linked to ageing, and in particularly, the notion of 'wear and tear' which was mentioned in consultations:
"I've been ...I've seen him...but all he said to me, you see (is), it's wear and tear. When he describes wear and tear if it's ...it's just age and it's just a 'whatsit'...as if nothing can be done for you [...] . With him telling me it was wear and tear that meant they couldn't do anything, but I don't know whether they can or not." (Geoff)
Clearly the perception that age, wear and tear and no effective treatment were inextricably linked meant that this person considered consultation futile. Many other participants talked about the concept of wear and tear and its negative impact on the thinking of health professionals, and in turn on their patients. The following excerpt made this very clear:
"Well, he [doctor] just took one look at it [knee] and just went: "live with it"." (John)
It may be that some GPs similarly view available interventions as having limited value, and a parallel can be drawn with studies that compare treatments for hip or knee problems, whereby referral for joint replacement is much lower for the knee than the hip [19].
Sociological studies have highlighted the issue of comparison, where people assess their own health status against others in their social network or with people suffering from similar conditions [20]. Moral judgements concerning one's status as deserving attention and health care were made within that comparative context, and even though individuals might suffer from a high degree of pain (as measured by the WOMAC) they did not consult:
"I don't think there is anything they can do really. Not going to give me two new knees, are they? I mean, and I wouldn't want two new knees, 'cos other people have much worse that need two new knees don't they?" (Barbara)
In contrast, a number of people gave explanations that appeared more pro-active, underlining their sense of self and in particular, their need for independence. One participant said in her interview that she was a 'very independent person' and this self image, combined with the notion of what constitutes a deserving case meant that she primarily managed her pain with prescribed or over the counter medicines. The other reason given for choosing not to consult was related to prioritising health problems. Many older people lived with more than one condition, and they often ranked them in terms of severity and perceived urgency:
"Well, they know I've got a bad knee, so there's no point in going down again, just for that. You know, if I needed her, yes, I would go. When they found the lump in my neck – Dr.W. was up here [...] and I had very quick treatment to check what it was. I was at the hospital and I'd seen a specialist within three days." (Shirley)
While the survey highlighted the fact that many people experienced moderate to severe knee pain, it also revealed that a large proportion did not consult their GP. The reasons for not consulting were explored in the interviews and diaries, providing evidence of clear choices made on the basis of judgements about effective interventions, threshold values, self-identity and prioritising health problems. An issue raised in earlier research [21] might be relevant here too, namely that by not consulting people felt that they maintained their status as healthy (i.e. not being a patient) and therefore enhanced their ability to cope with pain and disability. This highlights the limitations of using a single concept of health care need. When asked in the epidemiological survey people did report knee pain, but the interviews and diaries explained that the existence of this pain was not necessarily acknowledged as a symptom of illness.
Accessing health care other than the GP was reported in the survey, shown in figure 2 below.
Medicines use and self care featured prominently in the survey and qualitative study, and we discuss both types of use in more detail.
Medicine use
The previous graph demonstrated the prominent role of medication, despite interviewees expressing doubts about its effectiveness. When asked in the survey specifically about medicines use in the last two weeks, 63% of responders had taken some medication. Paracetamol was most commonly cited with 28% of responders indicating they had used this medication. Other common painkillers were Ibuprofen (16%), Co-proxamol (15%), Co-codamol (12%), Aspirin (7%), Diclofenac (4%), Dihydrocodeine (2.6%) and Naproxen (1%). (Co-proxamol has since been withdrawn due to concerns over its safety).
The continued use of medication was explained by many participants within the context of coping with disabling pain, and thus pain intensity and duration were the main factors determining this. The 'social contract' that patients have with their GP shapes their view that it is legitimate for GPs to prescribe drugs and for patients to take them [22]. Taken together these factors were strong drivers for people to adopt medications use as a strategy for managing pain. At the same time, ambivalence about taking medicines featured as a dominant theme in the interviews, and this reflects the findings from other researchers who report reasons for aversion to medicines that include: fear of drug dependency, stoicism, maintaining normality and identity, differences in expectations between professionals and patients, and concerns about the safety of medicines [20, 23–25]. The fear of side-effects was particularly prominent in relation to non-steroidal anti-inflammatories.
" [...] So she put me on a stronger Ibuprofen type of slow release which ...seems to help. She wanted me to have two a day, one in the morning and one at night, but I won't. I only have one in the morning. Sometimes I don't even have that cos like I say, I don't want to be stuck with tablets. I'm wary of side effects [...] You hear of the Ibuprofen type of thing can give you stomach bleed or anything. I don't want that, you know, or indigestions." (Shirley)
The level of discussion with the GP or other health professionals about the pros and cons of taking NSAIDs did not appear to be high, and in the interviews people said that they tended to make their own decisions about dosage. This reflected findings from other studies that people try to take as little medication as possible [20].
Self care and home remedies
The survey asked for use of complementary or alternative remedies and Figure 3 shows the extent of uptake. The most common remedy being used was cod liver oil with 33% of survey responders using this for their knee pain in the last two weeks. Glucosamine and Chondroitin were also common, with over 14% of responders with knee pain using this for their knee problem. These figures are similar to those reported by Jordan and colleagues [26] who studied adults aged 55 and over with a clinical diagnosis of knee OA.
The mechanisms that influence either a shift towards complementary and alternative medicine, or its use in parallel to conventional treatments are still not well understood and research on people with OA is just beginning [27]. Responders gave a further reason as to their decision to turn to other sources of help because they felt they had reached 'the end of the line':
"Everything that comes on the telly, I say...Oh, I'll try those, I'll try one of those, you know see how it works. Nothing really cures it but it does ease the pain." (Joyce)
While people did not elaborate in much detail on the use of alternatives, the diary study contained the account of one gentleman who described his strategies as follows:
07.30. My wife massaged my feet and legs, bathed them and applied cream.
19.00 – 19.25. Reflexology applied by my wife, felt completely relaxed afterwards. (Keith)
In between the two time periods he did exercises and tried to walk, but he obviously derived most benefit from the treatments administered by his wife. Rather than emphasising pain relief, he used the word 'relaxed'. This might be an indication that the more holistic approach of complementary therapies positively influenced his feelings about pain.
