Abstract
Objective. To explore the knowledge, beliefs, and experiences of general practitioners (GP) about inflammatory back pain (IBP) and axial spondyloarthritis (axSpA) and potential barriers for referral of patients suspected of having axSpA.
Methods. A qualitative study involving semistructured interviews with GP was conducted. Transcripts of the interviews were independently read and annotated by 2 readers. Illustrative themes were identified and a coding system to categorize the data was developed.
Results. Ten GP (all men; mean age 49 yrs) were interviewed. All could adequately describe “classic” ankylosing spondylitis (AS) and mentioned chronic back pain and/or stiffness as key features. All GP thought that AS is almost exclusively diagnosed in men. Six GP knew that there is a difference between mechanical back pain and IBP, but could recall only a limited number of variables indicative of IBP, such as awakening night pain (4 GP), insidious onset of back pain (1 GP), improvement with movement (1 GP), and (morning) stiffness (2 GP). Two GP mentioned peripheral arthritis as other SpA features, none mentioned dactylitis or enthesitis. GP awareness of associated extraarticular manifestations was low. Most GP expressed that (practical) referral measures would be useful.
Conclusion. GP are aware of “classic”, but longterm features of axSpA. Knowledge about the disease spectrum and early detection is, however, limited. Addressing these issues in training programs may improve recognition of axSpA in primary care. This may ultimately contribute to earlier referral, diagnosis, and initiation of effective treatment in patients with axSpA.
Spondyloarthritis (SpA) comprises a group of interrelated inflammatory disorders with overlapping clinical features and shared genetic markers. The estimated prevalence of SpA in white populations is about 1%, similar to that of rheumatoid arthritis1. Symptom patterns and physical signs of SpA can be divided into predominantly axial involvement, with inflammatory back pain (IBP) as the most important clinical feature and predominantly peripheral involvement including peripheral arthritis, dactylitis, and enthesitis2. Extraarticular manifestations related to axial and peripheral SpA include psoriasis, anterior uveitis, and inflammatory bowel disease.
Axial SpA (axSpA) comprises a disease continuum, including both nonradiographic axSpA and ankylosing spondylitis (AS)3. Patients with nonradiographic axSpA have similar clinical characteristics, disease activity, and response to treatment as patients with established AS, emphasizing the need for early and correct diagnosis4. However, the diagnosis of axSpA is often delayed owing to the insidious onset, the heterogeneous clinical picture, and a limited knowledge about the manifestations belonging to axSpA by general practitioners (GP) or other referring physicians5. Offering tools for referral may be helpful in improving early diagnosis. Several initiatives have been performed to study the effect of referral strategies in primary care. The objectives of these referral programs were to identify patients with possible axSpA early, to make a correct diagnosis, and to provide the best possible care as early as possible6. However, limited knowledge of manifestations belonging to axSpA might prevent successful implementation of these referral strategies in the primary care setting.
The aim of our qualitative study was to explore, using semistructured interviews, the knowledge, beliefs, and experiences of GP about IBP and axSpA, and the potential barriers for referral of patients suspected of having axSpA.
MATERIALS AND METHODS
Study design and participants
For this qualitative study, GP acquainted with the interviewers, without known specific interest or knowledge of musculoskeletal diseases and with various numbers of years of experience, were invited for a semistructured interview. A semistructured interview is a technique used to collect qualitative data about the topic of interest by combining open questions with the option to further explore particular answers7. The duration of 1 interview was about 1 h. The interviews took place in 2012 and all invited GP were working in the region of Limburg, The Netherlands. The study was approved by the ethics committee from the Maastricht University Medical Center. All participants provided written informed consent and thereby agreed to the presentation of the collected data and quotes in anonymized form.
Data collection
An interview guide that consisted of both open-ended and closed questions was developed to secure uniform data quality and comparability. A pilot interview was conducted to ensure that the questions were clear and addressed all important topics. Each interview was audio-taped and afterward fully transcribed. Each transcript was offered to the matching GP to review for validation.
The topics addressed in the interview included general questions: age, working experience in years as a GP, and specific medical interests. More substantial questions asked about the GP’s (1) approach to patients presenting with chronic back pain, knowledge about symptoms indicative of mechanical back pain (MBP) or IBP, management of back pain, and motivating factors to refer a patient to a rheumatologist; (2) perceptions and knowledge about axSpA, including nonradiographic axSpA and AS, awareness about diagnostic delay, and knowledge of extraarticular manifestations of axSpA; (3) approach to patients already diagnosed with axSpA, and disease management; and (4) awareness of treatment options and opinion about the current standards of care for patients with axSpA.
Data analysis
The transcripts were independently analyzed by 2 readers. All transcripts were repeatedly read and annotated. A coding system based on the grounded theory approach was developed by defining categories and developing a taxonomy of the data7. The readers met regularly to discuss coding and interpretation of data. In case of disagreement, consensus was reached between the 2 readers after re-reading the specific passage of the transcript. While analyzing the data, illustrative quotes made by GP were collected.
RESULTS
Participant characteristics
Ten of 16 invited GP agreed to participate and were interviewed. All of the GP included were men and the mean age was 49 years (range 37–58 yrs; SD 6.4 yrs). The mean number of years of experience as a GP was 20 years (range 10–29 yrs; SD 6.0 yrs). Three GP had a specific interest in musculoskeletal disorders. When GP were asked to estimate the mean number of patients with AS registered in their practice, the range of answers was between 0 and > 10 patients (without further specification).
When analyzing the data, a number of themes and patterns were identified across the interviews. These themes and patterns are described below and exemplified in quotes (Table 1).
Illustrative quotes made by general practitioners.
Ability to differentiate MBP from IBP
Four GP were not familiar with the terms MBP and IBP (quote 1). Six GP knew that there is a difference between MBP and IBP, but these GP could recall only a limited number of typical variables to differentiate MBP from IBP. Four of these 6 GP mentioned awakening night pain as a typical feature of IBP and considered it a relevant symptom that needed attention (quote 2). Two GP also mentioned insidious onset of back pain and improvement of back pain with movement as typical features of IBP. Morning stiffness was mentioned by 2 GP. Seven GP mentioned stiffness of the back as typical for AS but did not elaborate on the course of stiffness during the day.
Knowledge about the terms “classic” AS and axSpA and awareness about diagnostic delay
All GP were familiar with the term AS and mentioned back pain and/or stiffness of the back as prominent features of AS. Three GP also considered (severe) kyphosis as an important feature of AS. None of the GP could give an adequate description of the term axSpA.
When asked about the age at onset of first symptoms, all GP answered that symptoms first appear in early adulthood. All GP thought that AS is almost exclusively diagnosed in men. Two GP thought that the delay in diagnosis was less than 1 year. The remainder of GP answered that the delay in diagnosis was up to several years, without further specification. A few GP commented that this is probably due to a patients’ and doctors’ delay (quote 3).
Knowledge about associated clinical manifestations of axSpA
Most GP could describe only a limited number of clinical features belonging to axSpA. Two GP considered peripheral arthritis as belonging to the spectrum of axSpA; dactylitis and enthesitis were not mentioned at all. When asked about extraarticular manifestations of patients with axSpA, 5 GP mentioned anterior uveitis and 1 GP mentioned “eye complaints” (quote 4). Inflammatory bowel disease was mentioned by 2 GP and psoriasis by 3.
Use of diagnostic tests in the primary care setting
None of the GP would order an HLA-B27 test when a patient presented with chronic back pain. A few GP commented that this test should only be ordered by the rheumatologist (quote 5). Most GP specifically commented that they would only order a conventional radiograph in case of chronic back pain. One GP mentioned that a normal pelvic radiograph in a patient presenting with back pain would be a motivating factor to refer this patient to a neurologist and not a rheumatologist (quote 6).
Perceptions about management of axSpA
A decrease in pain and stiffness of the back and maintaining function were judged as the most important treatment goals by the majority of the GP. The use of nonsteroidal antiinflammatory drugs (NSAID) was considered an adequate treatment option by all GP. Most GP also mentioned physical therapy or that the patient should do home-based exercises. Five GP indicated that antitumor necrosis factor (TNF)-α therapy can be prescribed to patients with axSpA. Four GP were aware of the fact that an increased risk of (serious) infections is an important side effect of anti-TNF-α therapy.
Preferences for educational programs about axSpA
Most GP expressed that (practical) referral measures to decrease the delay in diagnosis would be useful in clinical practice (quote 7). Most GP also wanted to know more about the treatment options, including anti-TNF-α therapy. One GP revealed that he recently did educational training that focused on axSpA. At the end of this training he realized that there were probably several undiagnosed patients in his practice (quote 8).
DISCUSSION
Our study demonstrated that there are several inconsistencies in the perceptions of GP about diagnosis and management of axSpA, including AS. Most GP could provide an adequate description about “classic” AS and were aware of the fact that there is a substantial delay in diagnosis. GP also knew that there is a difference between MBP and IBP, but were unable to explain how to differentiate one from the other. Knowledge about the disease spectrum of axSpA and associated extraarticular manifestations was limited. All GP were aware of the benefits of physiotherapy and NSAID, and half of the GP knew that anti-TNF-α therapy can be prescribed in patients with axSpA.
Chronic back pain is a common symptom in the general population and it is estimated that in 5% of these cases axSpA is the underlying disease8. In about 75% of the patients with axSpA, the chronic back pain has an inflammatory character. Several criteria sets to define IBP have been proposed, consisting of several measures to differentiate IBP from MBP. Single variables were insufficiently predictive in defining IBP, because they are also frequently present in patients without an inflammatory cause of their back pain9. Overall, the IBP criteria sets have a comparable sensitivity and specificity of about 75% to 80%9,10,11. IBP has been tested as a single referral measure and as part of a composite referral strategy in several studies5,12,13,14. When patients were referred by GP because of IBP alone, axSpA was diagnosed in 16% to 33% of the referred patients5,12,13. However, when patients were referred because of IBP in combination with other variables, such as HLA-B27 or sacroiliitis on imaging, axSpA was diagnosed in 35% to 56% of the referred patients5,12,14.
Knowledge of important features associated with axSpA is essential before a referral strategy can successfully be implemented in the primary care setting. Six GP in our study could recall only a few items indicative of IBP and 4 GP were not familiar with the terms MBP and IBP. This was also observed in a study by Jois, et al15. Only 5% of GP in their study could identify all variables indicative of IBP when a list of prespecified response choices was presented to them. Further, studies have shown that the degree of agreement between referring physicians (including GP) and rheumatologists when evaluating IBP in patients with suspected axSpA is poor (kappa values between 0.04–0.20)5,16. Educating GP about the full range of variables indicative of IBP therefore seems to be the first step before IBP can successfully be used in a referral tool. The term “axial spondyloarthritis” will also increasingly be used in correspondence from rheumatologists to GP. It is, therefore, important to make GP familiar with this new terminology.
In our study, GP could recall only a limited number of extraarticular manifestations associated with axSpA. In some cases, GP mentioned “eye complaints” or “skin problems”. Dactylitis and enthesitis were not mentioned at all by the GP in our study. Jois, et al also investigated the recognition of extraarticular manifestations of SpA by GP15. Psoriasis, inflammatory bowel disease, and uveitis were recognized as an extraarticular manifestation by 96%, 68%, and 60%, respectively, of GP, which is a higher proportion than in our small-sized study15. However, in our study open-ended questions were used, which probably resulted in lower response rates than the survey used in the study of Jois, et al15. All GP in our study also indicated that AS is almost exclusively diagnosed in men. Several studies that included patients with undifferentiated and nonradiographic axSpA, however, demonstrated that the sex ratio is more equally distributed17,18,19. Male sex has, however, been found to be a risk factor for developing radiographic sacroiliitis20,21. Further, patients with radiographic sacroiliitis have, in general, higher inflammatory markers than patients with nonradiographic axSpA4,22. Increasing awareness among GP that axSpA is equally present in females and males, and making them aware of the “SpA concept”, which includes axial, but also peripheral and extraarticular manifestations, will likely facilitate referral and timely diagnosis.
Half of the GP in our study were aware that the therapeutic armamentarium in patients with axSpA is broadened with the introduction of anti-TNF-α therapy. When GP were asked about the side effects of anti-TNF-α therapy, 6 GP were not aware of the higher risk of (serious) infections. Collaboration and co-management with the rheumatologist is essential in managing patients with axSpA. Therefore, education about anti-TNF therapy and its side effects is an important step to maintain and improve the general health status of a patient with axSpA.
In general, the level of knowledge about axSpA was low. None of the GP could provide a specific reason for this lack of knowledge. Possible explanations are relatively low attention to this topic in medical school or at continuous medical education, and the large emphasis on a nonspecific cause of chronic back pain23.
There were limitations in our study that need to be addressed. The design of the study was qualitative and the number of GP included was small. Further, only male and experienced GP were included. Several female GP were asked, but they declined to participate. Logistically, it was extremely difficult to include recently qualified GP, because in the Netherlands almost none of them have their own practices. We cannot rule out that selection bias or knowledge bias occurred. This may limit reproducibility of results and the ability to generalize them to a wider population. However, the main goal of this study was not to extrapolate the current findings to all GP, but to explore the level of knowledge and awareness that probably need attention in future educational programs. Further, theoretical saturation was reached with this number of GP.
Most GP were familiar with “classic” but longterm features of axSpA. Knowledge about variables indicative of IBP and awareness about the full range of SpA features, including the associated extraarticular manifestations, was limited. The disease spectrum and management of axSpA have changed substantially over the last few years. Educating GP about the leading presenting symptoms of axSpA and providing information about extraarticular disease manifestations and management of axSpA will be important in the successful referral of patients with suspected axSpA by GP. This may ultimately contribute to earlier initiation of effective treatment and the improvement of quality of life.
Footnotes
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A goodwill donation for the interviews with the general practitioners was provided by Abbvie.
- Accepted for publication January 21, 2014.
