Family Practice Advance Access originally published online on January 7, 2005
Family Practice 2005 22(1):96-102; doi:10.1093/fampra/cmh702
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Diagnostic discordance: we cannot agree when to call knee pain ‘osteoarthritis’
a Primary Care Sciences Research Centre, Keele University, Keele, Staffordshire ST5 5BG, b Moorlands Medical Centre, Leek, Staffordshire, c Staffordshire Moorlands Primary Care Research Consortium and 4 Staffordshire Rheumatology Centre, Haywood Hospital, Stoke-on-Trent, UK
Email: g.m.peat{at}cphc.keele.ac.uk
Received 2 March 2004; Accepted 25 May 2004.
Peat G, Greig J, Wood L, Wilkie R, Thomas E and Croft P, for the KNE-SCI Study Group. Diagnostic discordance: we cannot agree when to call knee pain ‘osteoarthritis’. Family Practice 2004; 22: 96–102.
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Abstract |
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Background. Joint pain is common in community-dwelling older adults. Osteoarthritis is the most likely cause and the most common diagnosis made in this age group by GPs. However, the level of agreement between patients and their GPs in this diagnosis is questionable and may have important implications for clinical care.
Objectives. Our aim was to determine the level of agreement between GP diagnosis of knee osteoarthritis and patients' own attribution of osteoarthritis in older adults consulting their GP with knee pain.
Methods. Forty-five patients aged 
50 years were recruited retrospectively from consecutive knee pain attenders at two general practices in North Staffordshire. All patients were assessed by trained research physiotherapists using standardized assessment procedures. Patients' attribution was assessed by the open-ended question "What do you think is the matter with your knee now?" Blind to the findings of the assessment, a researcher extracted the most recent knee-related Read code recorded by the patient's GP from the medical records to determine GP diagnosis. The physiotherapists also classified patients as osteoarthritis or non-osteoarthritis according to the American College of Rheumatology's clinical classification criteria.
Results. Agreement between GP diagnosis of ‘knee osteoarthritis’ or ‘osteoarthritis NOS’ and patient diagnostic attribution of knee ‘arthritis’ or ‘osteoarthritis’ was poor [kappa = –0.03; 95% confidence interval (CI) –0.32 to 0.26]. Neither the GP diagnosis nor the patient diagnostic attribution was strongly related to clinical classification using standard criteria (kappa = 0.28; 95% CI –0.01 to 0.56; and kappa = –0.39; 95% CI –0.66 to –0.13, respectively).
Conclusions. The level of agreement between a GP diagnostic code of osteoarthritis and patients' use of the term ‘(osteo)arthritis’ is no greater than would be expected by chance alone. Discordance may be high in the use of the label osteoarthritis but is not direct evidence of a lack of shared understanding of this condition.
Keywords. Diagnosis, knee osteoarthritis, primary care.
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Introduction |
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Joint pain is common in older adults, with knee pain lasting 4 weeks, for example, reported by 25% of adults aged
55 years in any given year.1 Osteoarthritis is regarded as the likely cause in most cases and indeed is one of the most common diagnoses made by GPs in older adults, behind only acute bronchitis and essential hypertension.2 Despite this, the usefulness of diagnosing joint pain as osteoarthritis in this setting has been challenged on a number of fronts: notably the absence of a clear basis for diagnosing osteoarthritis in primary care, and the potential for effective management without the diagnosis of disease. Osteoarthritis can be defined by symptoms or pathology, the latter traditionally by radiographic features such as joint space narrowing, subchondral sclerosis and marginal osteophytes. However, discordance between these in the general population was recognized in early studies and "the discordance of radiographic osteoarthritis with knee pain has been a consistent finding in many subsequent surveys of this condition".3 A recent National Institute of Health (NIH) consensus meeting concluded that "it is important to separate conceptually the disease process of osteoarthritis and the syndrome of musculoskeletal pain and disability"4 and that "from a clinical perspective, the most compelling definition of disease is one that combines the pathology of disease with pain that occurs with joint use".5 This definition of symptomatic osteoarthritis, still essentially disease-based but selecting the subgroup with symptoms, is increasingly being used in studies to investigate the aetiology, prognosis and management of knee osteoarthritis (e.g. the NIH's Osteoarthritis Initiative). This, however, is unlikely to be the basis for diagnosis in primary care. In this setting, the diagnostic yield from plain radiography is often poor, and X-ray findings appear to result in little alteration in management (except possibly referral to orthopaedic surgery6), despite being valued by GPs and patients in certain circumstances.7 In adults with knee pain without serious locking or restriction of movement, radiography is not routinely recommended8 and is regarded by some experts as having little clinical value in the context of osteoarthritis.9 The diagnosis of osteoarthritis in primary care must, therefore, be made predominantly on other grounds.
Current guidelines suggest typical clinical features that may help establish the diagnosis of osteoarthritis in older adults, some of which form the basis of the clinical classification criteria of the American College of Rheumatology (ACR).10–12 However, the accurate assessment of these may require skilled examination,13 and poor agreement between classifying osteoarthritis using such clinical criteria and classification based on a combination of symptoms and radiographic features of pathology has been reported in primary care14 and in the general population.15 In the absence of a clear basis for diagnosing osteoarthritis in primary care, it is perhaps unsurprising that the variation of diagnostic quality between GPs is substantial.16 The rate of osteoarthritis diagnoses recorded by GPs for older patients presenting with hip pain has been reported as ranging from 5 to 50% and that a large part of this variability is explained by the individual GPs themselves after adjusting for patient age, gender and number of visits.17
Another challenge to the usefulness of diagnosing joint pain as osteoarthritis in older adults presenting to primary care is the contention that effective management does not rely on the diagnosis of osteoarthritis. Direct evidence for this is lacking and difficult to obtain. However, it has been argued that patients seek treatment for pain not osteoarthritis,18 that radiographic features are only weakly related to pain and disability severity, that treatments are predominantly symptomatic, and that even the decision to refer for joint replacement should be more strongly influenced by the severity of pain and disability than by pathoanatomical features of disease.19 Instead of a traditional disease-based approach to diagnosis, it has been proposed that joint pain in older adults, after the exclusion of potentially serious pathology, be viewed as a regional pain syndrome much the same as low-back pain.3,20 Such an approach contrasts with many existing clinical practice guidelines which take as their starting point ‘osteoarthritis’ and not ‘joint pain’.21
In considering different perspectives on osteoarthritis diagnosis and classification, patients' own diagnostic attributions have been less prominent although it is known that the majority of older adults with chronic pain in the general population attribute this to ‘arthritis’.22 These diagnostic attributions may be significant in a chronic condition where self-management plays such a crucial role. The label used to describe their illness contributes to patients' perceptions of the identity of their problem,23 which in turn have been associated with adherence and health outcomes across a range of chronic conditions.23–26 Furthermore, there is some evidence that discordance between patients' and GPs' illness perceptions of osteoarthritis are associated with worse health status and greater health care use.27 The diagnostic label itself, however, has not been included in measures of identity perceptions.28
In a sample of adults aged 50 years consulting their GP with knee pain, we investigated the level of agreement between a GP diagnosis of ‘osteoarthritis’ in the medical records and patients' own diagnostic attribution of ‘(osteo)arthritis’. Both were compared with physiotherapist classification using the ACR clinical criteria.10
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Methods |
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The study was approved by North Staffordshire Local Research Ethics Committee. Prior to data collection, all participants provided written informed consent for the assessment and medical record review.
Sampling
Potential participants were identified by retrospective search of the computerized consultation records of two general practices in North Staffordshire. Records were searched for any Read-coded knee consultations in the previous 18 months. Read codes are a hierarchical dictionary of medical terms, synonyms and codes specifically created to enable a complete medical record to be coded and stored on computers. Knee consultations were identified by codes for symptoms and conditions. GPs in the practices use the Read coding system and apply it to all consultations. Consecutive patients meeting the eligibility criteria were invited to participate.
A two-stage process for determining eligibility was used. During record review, the inclusion criteria were: (i) aged 50 years; and (ii) consulted with any Read-coded knee problem within the last 18 months. Exclusion criteria were: (i) joint replacement in the affected knee; (ii) patients no longer registered with the practice; and (iii) psychiatric illness or learning difficulties.
Potentially eligible patients were sent an invitation letter and information sheet explaining the study and encouraged to telephone the centre if they were interested in participating. Those who did were screened to ensure that they had experienced pain, aching or discomfort in one or both knees within the last month, and to verify that they did not have a joint replacement in the affected knee.
Data collection
Standardized clinical assessment. All eligible participants were booked in for an appointment at a local hospital out-patient department where they underwent a standardized clinical assessment by a trained research physiotherapist. To verify the inter-observer reliability of the assessment, this was repeated at the same clinic visit by a second research physiotherapist blind to the findings of the previous assessment. All participants were asked a simple open-ended question designed to elucidate their own diagnostic attribution ("What do you think is the matter with your knee?"). Patient diagnostic attribution was classified as osteoarthritis if their response included the terms ‘arthritis’ or ‘osteoarthritis’. In addition, a standardized clinical assessment was performed by each physiotherapist that included clinical interview and physical examination items required to classify each participant as osteoarthritis according to the ACR clinical classification criteria for knee osteoarthritis (classification tree method):1
- pain on most days in last month + no crepitus + bony enlargement
- pain on most days in last month + crepitus + morning stiffness
30 min
- pain on most days in last month + crepitus + morning stiffness >30 min + bony enlargement.
The physiotherapists were blinded to the medical records.
At the clinic visit, participants were also invited to complete a brief set of self-report questionnaires without the input of observers. This included the Western Ontario and McMaster Universities Osteoarthritis index (WOMAC), a well-validated, self-report, self-complete questionnaire designed for hip or knee osteoarthritis which measures the severity of pain (0–20), stiffness (0–8) and physical functioning (0–68).29
GP medical record abstraction. A detailed review of all participants' medical records was conducted by a GP Research Fellow experienced in the use of both computer-based and paper medical records in general practice. Data on all documented knee-related consultations in the previous 3 years were extracted using a standardized Data Abstraction Form. Participants were classified as having a GP diagnosis of osteoarthritis if the most recent knee-related Read code in the consultation record was ‘Knee osteoarthritis’ or ‘Osteoarthritis NOS’. The GP Research Fellow was blinded to the clinical assessment findings.
Statistical analysis
Data were analysed in SPSS (SPSS Inc., Chicago, IL). Agreement between the three different methods of knee osteoarthritis classification was summarized by actual agreement (%) and agreement beyond chance [kappa and 95% confidence interval (CI)]. Kappa is a measure of chance-corrected agreement between two raters and ranges from –1 (complete disagreement) to +1 (perfect agreement). A kappa value of zero indicates agreement equal to that expected by chance alone.30
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Results |
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Initial search of the computerized records identified 175 patients who had consulted and were eligible to participate. Forty-five patients agreed to participate in the study, conducted between September 2001 and April 2002. Participants covered a wide spectrum of ages and levels of pain/disability severity. The descriptive characteristics of the sample are shown in Table 1.
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Twenty-one out of 45 participants (47%) had a GP diagnosis of osteoarthritis or knee osteoarthritis. Of these, 10 had had knee X-rays in the previous 3 years.
Non-osteoarthritis diagnoses in the remaining 24 participants were anterior knee pain (nine), arthralgia of lower leg (five), knee (joint) pain (four), other knee injury (four), pain in leg (one) and pre-patellar bursitis (one) (Table 2).
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Participants attributed their knee problems to a variety of processes including ‘wear and tear’. Twenty out of 45 participants (44%) specifically used the terms ‘osteoarthritis’ or ‘arthritis’ in response to the interview question.
One participant had missing data on the clinical assessment. Twenty-five out of 44 participants (57%) with complete data were classified as knee osteoarthritis by the physiotherapist using the ACR clinical criteria.
Actual agreement and agreement beyond chance between the three different perspectives are shown in Table 3. Agreement between GP diagnosis and patient diagnostic attribution was poor31 (actual agreement = 49%; kappa = –0.03; 95% CI –0.32 to 0.26). Agreement between GP diagnosis and ACR clinical classification was fair (actual agreement = 64%; kappa = 0.28; 95% CI –0.01 to 0.56). There was positive disagreement between patient diagnostic attribution and ACR clinical classification (actual agreement = 30%; kappa = –0.39; 95% CI –0.66 to –0.13).
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Discussion |
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The current study sought to extend knowledge of the discordance of different approaches to classifying osteoarthritis by including the perspective of patients in the form of their diagnostic attributions. Our findings, based on a relatively small sample of patients selected from two general practices, suggest that the level of agreement between a GP diagnostic code of osteo-arthritis and patients' use of the term ‘(osteo)arthritis’ to describe what they feel is the matter with their knees is no greater than would be expected by chance alone.
Agreement rates between patient self-reported diagnoses and GP diagnoses vary greatly for different chronic diseases.32 Self-reported diagnoses for well-known chronic disorders with clear diagnostic criteria, or that are severe, costly or require treatment, appear to agree better with medical sources of information33–35 In a large Dutch study32 comparing patients and GPs on the presence of selected chronic diseases, concordance was high for diabetes (agreement = 97.9%; kappa = 0.85) but comparatively poor for osteoarthritis and/or rheumatoid arthritis (agreement = 72%; kappa = 0.31). It should be noted that this study was conducted in the general population containing asymptomatic individuals (where a diagnosis of osteoarthritis would not be considered) and related to a diagnosis of osteoarthritis combined with rheumatoid arthritis, the latter known to be more accurately reported.36 Furthermore, the presence of diagnoses was assessed by presenting patients and GPs with a closed-ended list of conditions to which they responded ‘yes/no’ which might itself be expected to enhance agreement. In the present study, participants had all recently consulted their GP about their knee problem and patient diagnostic attributions were assessed using open-ended questions to enable participants to express these in their own terms.
Discordance between GP and patient diagnosis of osteoarthritis appears then to be well established in quantitative studies, with the possible exception of specific selected populations, e.g. those recruited to self-help programmes,37 and self-reported diagnoses of osteoarthritis may not be trustworthy as estimates of disease prevalence.38 However, this finding also raises the question as to whether the lack of a shared use of the term ‘osteoarthritis’ is evidence of a general discordance between GPs and their patients in the perceptions of the illness. This has implications for the way in which practitioners elicit and match these in the course of the consultation.39,40
The labels that GPs and patients use to describe the problem are only one aspect of such perceptions, and we must be cautious when interpreting the current findings. They do not provide direct evidence about the quality of communication between GPs and their patients. For example, it seems plausible that Read codes may reflect not only GPs' diagnostic beliefs but also patterns of coding behaviour influenced by contextual factors, e.g. minimizing the range of codes used for a given patient or group of patients. Furthermore, the extent to which Read codes reflect what is actually communicated to patients is unclear. Patients themselves may recall perfectly well the "gist of what had been said" (p. 446),41 but choose not to use the term ‘osteoarthritis’ to describe their problem, instead translating medical jargon into lay language. Previous studies of patients in a rheumatology setting have reported relatively high levels of shared beliefs amongst those with an osteoarthritis diagnosis: namely that osteoarthritis is a serious, chronic and incurable condition.42 Identity, in the form of either the labels used or the meaning underlying them, was not explored. Patients appear to value having an accurate diagnosis.43 However, participants in this study with a GP diagnosis of osteoarthritis provided widely differing accounts of their diagnostic attributions, ranging from "muscle problem" to "crumbling bones". The impact of these perceptions and other commonly cited ones such as "old age" and "wear and tear", whether shared with GPs or not, remains to be determined.
Conclusion
Osteoarthritis is a common diagnosis in general practice. Our findings suggest, however, that there is substantial discordance between the GP diagnosis and patients' own use of the term ‘osteoarthritis’. Neither is strongly related to standard clinical classification. The extent to which this discordance indicates a general lack of shared understanding between GPs and patients about osteoarthritis is unclear and warrants further investigation.
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Declaration |
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Funding: This research was supported by a Programme Grant from the Medical Research Council. NHS R&D funding to Staffordshire Moorlands Primary Care Research Consortium.
Ethical approval: The study was approved by the North Staffordshire Local Research Ethics Committee (Project no. 1193).
Conflicts of interest: None to declare.
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Acknowledgments |
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The authors would like to express their thanks to the staff and patients of the participating practices, Staffordshire Rheumatology Centre, and to the administrative and health informatics staff at PCSRC.
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