| BackgroundAnkylosing spondylitis (AS) is a chronic inflammatory disease, often results in significant impairment on physical function, working ability and quality of life. The majority of AS patients may lose most of their spinal mobility within the first10years of onset. With the tremendous development of treatment strategies, in particular, the advent of TNF-inhibitors, the primary aim of AS management has varied from symptom relief to the modification of disease progression. The current evidence implies that only when the structural damage has not happened or just appeared in quite mild extent, could the management modalities achieve the optimal effect. Therefore, early interventions on the basis of early correct diagnosis are essential in the treatment of AS. Unfortunately, it has been frequently reported that AS disease often keeps progressing for as long as5to10years from the onset of symptoms till to the correct diagnosis at last. Early diagnosis of AS is often missed in clinical practice mainly due to several disease characteristics which include:(1) the late onset of inflammatory back pain (IBP);(2) the late onset of radiographic sacroiliitis which is mandatory in the modified New York criteria;(3) the lack of pathognomonic clinical and laboratory tests. In addition, other factors, such as negative HLA-B27, negative family history and early age of onset were also regarded as risk factors of diagnosis delay in some reports. However, misdiagnosis may be anther risk factor which may directly mask the correct diagnosis of AS and lead to mistreatment for AS patients. In a recent study, the initial diagnosis of LDH was reported as an obvious hindering factor for early correct diagnosis of AS. In another study, rheumatoid arthritis and tuberculosis of spine were also regarded as risk factors of diagnosis delay. At present, studies focusing on the misdiagnoses and the related impacts in AS remain limited. The Assessment of SpondyloArthritis International Society (ASAS) group has developed criteria to classify patients with axial or peripheral SpA in2009. In clinical practice, these criteria have been applied in diagnosis as well as differential diagnosis of SpA. Although AS is the prototypical form of axial SpA, the effect of these criteria on diagnosis and differential diagnosis of AS is not clear.At present, pharmacotherapy has obvious ability to relieve symptoms and the potential ability to slow down or even to prevent AS progression. With the development of evidence, concepts about conventional drugs such as NSAIDs, disease-modifying antirheumatic drugs (DMARDs) and glucocorticoids have been substantially changed in the past decade. NSAIDs have long been regarded as the first-line drug in AS pharmacotherapy and have been often prescribed with the primary aim for symptomatic improvements. Recently, however, the concept toward NSAIDs probably needs to be improved. Several studies indicate that NSAIDs may also play a valuable role in reducing or even reverting the disease progression. Despite the definite efficacy of DMARDs in rheumatoid arthritis (RA), sulfasalazine is at present the only one recommended drug of limited effect for AS patients with peripheral arthritis. Glucocorticoids are traditional drugs in effective control of autoimmune diseases. The available evidence, however, is mainly limited in local injections for AS management. The advent of TNF-inhibitors is thought to have revolutionised the management of AS. Nevertheless, not all of the AS patient meet the criteria to use TNF-inhibitors. In the meanwhile, due to various reasons, such as the high cost and the fear of side effects, not all of the AS patients that meet the criteria for biologic therapy have actually used TNF-inhibitors. Certain time is required for understanding and acceptance of the new changes. In order to provide guidance for clinicians and to standardize the procedure for monitoring and treating patients with AS, evidence based management recommendations was developed under the collaboration of the Assessment in SpondyloArthritis international Society (ASAS) and the European League Against Rheumatism(EULAR) in2005which had been updated once in2010. Consensus statement on the use of TNF-inhibitors was published by ASAS as early as in2003and was updated twice in2006and2010respectively. However, if these recommendations were implemented well enough in clinical practice is not clear.Despite substantial progress in pharmacotherapy, the recommendations developed under the collaboration of the Assessment in SpondyloArthritis international Society (ASAS) and the European League Against Rheumatism(EULAR) have consistently stressed that exercise is the indispensable component in comprehensive AS management. Substantial evidence in current literature has confirmed the effect of exercise in relieving physical symptom and improving physical function, psychological status and quality of life for AS patients. In addition, the combination of exercise and pharmacotherapy may decrease drug consumption and thus reduce related adverse effects. Home-based exercise, supervised exercise, group exercise and spa-based exercise are all frequently reported with certain benefit. Although there has been no consensus on which specific type of exercise with what frequency is optimal, adherence is thought to be the most important factor for AS patients to benefit from exercise. So far, most reports mainly focused on the effect of certain exercise for AS patients who had followed the clinicians’prescription. Studies investigating the real status of exercise in AS patients’daily life remain scarce.It is deemed that the younger the age at the onset, the greater is the likelihood of hip involvement. Male, axial disease, and enthesitis are also regarded as risk factors of hip involvement and the need for THA in AS. Hip involvement occurs in25%to50%of patients with AS, and47%to90%of patients who have such involvement have it bilaterally. Hip joint involvement in AS often results in severe deformities and may also harm other activities related to spinal mobility. The combination of the stiff spine and hip can cause severe disability in the patients. In addition, hip involvement can not only affect the patients in physical status but also in employability, psychosocial status and comprehensive quality of life. Till now, THA is still the standard operation for pain relief and function improvement to treat patients with AS. However, THA for AS patients with stiff spine and involvement in other systems such as the pulmonary and cardiovascular systems is still a challenging procedure. More attention should be paid on certain AS-specific problems regarding effect of THA on patients’"disease activity","physical function","ability for daily life","employability", and "marriage".Despite substantial progress in pharmacotherapy and physical therapy in AS management, certain problems still exist which could not be effectively resolved by neither pharmacotherapy nor physical therapy at present. The optimal therapeutic effects are often missed due to the insufficiency of patients’long-term compliance with the prescriptions. Actually, this phenomenon of poor compliance with the doctors’prescriptions may be quite common among AS patients. There are a variety of reasons to explain it, for example the lack of knowledge about AS disease and its’ treatment. Besides, certain inappropriate behaviors in the patients’daily life or work may further aggravate the disease condition. A potential vicious circle may exist in aspect of psychological status of AS patients. The disease may lead to certain psychological abnormalities and these abnormalities may in turn affect the development of AS. Solutions to these problems mentioned above necessitate effective patient education which has been widely applied in other chronic diseases, such as diabetes, asthma and rheumatoid arthritis (RA). Although it has been stressed as the cornerstone in the non-pharmacotherapy for AS in ASAS/EULAR recommendations, studies concentrating on AS patient education remain quite scanty in current literature. In recent years, types of patient education for chronic diseases have been no longer limited in face-to-face or written educational forms but have taken on a tendency of diversification. In particular, computer and internet have been frequently reported to play an increasing important role in patient education and AS patients seem to be of high access to these modern communication means due to their relatively young age. The specific effects of these educational types, however, remain indefinite in AS patients and need to be explored.AS occurs predominantly in early adulthood, but can also occur in childhood. When AS occurs≤16years of age, it is termed JoAS, and when it occurs after the age of16, it is termed AoAS. Although JoAS shares certain similar features with AoAS, for example the presence of radiographic sacroiliitis, it may also have some specific clinical characteristics that distinguish it from AoAS. Most of the studies reflected that JoAS often had significant longer diagnosis delay compared with AoAS whereas some other studies had not included the comparison in this aspect. JoAS has been reported with higher frequency of peripheral joints involvement, especially the involvement of the hip joint. Although hip joint involvement has been thought to be associated with worse functional outcome for AS patients, discrepancies, however, exist in the comparison of functional status between JoAS and AoAS. The majority of the present studies reported that JoAS had worse functional outcome than AoAS while some other studies failed to detect the differences between JoAS and AoAS. Moreover, there were also sparse reports that even reflected that JoAS might suffer from less functional impairment than AoAS. Radiographical differences between JoAS and AoAS have also been assessed in several studies and JoAS was reported to have less severe axial involvement radiographically compared with AoAS. Overall, most of the studies so far have mainly focused on the differences in aspect of clinical features between JoAS and AoAS. Studies centering on the potential differences between JoAS and AoAS in certain important aspects of quality of life, such as educational level, status of employment and status of marriage, remain scarce.Objectives(1) To assess the current status and related impacts of alternative diagnoses before the final correct diagnosis of AS.(2) To examine the status of pharmacotherapy for AS in comparison with current recommendations.(3) To assess the current status of exercise in AS patients’daily life and to analyze the patients’perception to exercise.(4) To explore effect of THA on patients’"disease activity","physical function","ability for daily life","employability", and "marriage".In addition, we will also compare of rate of HO between patients with AS,DDH and AFN.(5) To explore the current status of patient education for AS reported in the literature. In addition, the barriers to patient education, prerequisites for patient education, practical educational forms, contents of patient education as well as the educational efficiency assessment will be also explored.(6) Detection of differences is the precondition for the development of specific interventions. So, in this study, we also tried to compare the differences in clinical features as well as several essential factors related with quality of life between JoAS and AoAS.Patients and Methods(1) PatientsAll of the included patients were at least18years old and should have a confirmed diagnosis of AS according to modified New York classification criteria.(2) MethodsI Questionnaire was used which contains a number of demographic variables, such as age, sex, status of marriage (married, unmarried or divorced) and status of employment (employed, unemployed or never got employed).II Disease characteristics of the study participants were examined by a questionnaire which includes:family history, HLA-B27status, initial symptoms (peripheral or axial), age at onset of AS symptom (juvenile onset or adult onset), age at correct diagnosis of AS, alternative diagnoses before final AS diagnosis and in particular, the specialties of the clinicians who made the alternative diagnoses.Ⅲ Disease activity measured by BASDAIⅣ Functional status measured by BASFI.Ⅴ Disease-related quality of life was measured with ASQoLⅥ EBBS was applied to examine AS patients’perception towards benefits of exercise and barriers to exercise.Ⅶ Disease duration was then defined as the interval between the age at onset of AS symptom and the current age. Diagnosis delay was defined as the gap between the age at onset of AS symptom and the age of correct AS diagnosis.Ⅷ Questionnaire was designed to assess the whole experience of non-biologic pharmacotherapy during12months prior to this study and included:①type of drugs,②reasons for switching drugs, and③reasons for ceasing drugs. IX Questionnaire was designed to assess the whole experience of biologic pharmacotherapy not during the previous12months but during the whole course of the disease and included:①types of TNF-inhibitors they know about,②reasons for not using TNF-inhibitors,③types of TNF-inhibitors they have ever used,④reasons for their choice of the type of TNF-inhibitors,⑤duration of TNF-inhibitors treatment,⑥reasons for switching TNF-inhibitors, and⑦reasons for ceasing TNF-inhibitors.X We took the2010version ASAS/EULAR recommendations for AS management and2010version of ASAS recommendations for application of TNF-inhibitors as the standard to compare the discrepancies.XI Questionnaire was designed on the basis of exercise interventions in the literature to assess the experience of exercise during the whole course of the AS disease and included:①types of exercise recommended by clinicians,②types of exercise actually performed in daily life,③the frequency of participation (times per week).M To get information related to effect of THA on patients’"disease activity","physical function","ability for daily life","employability","marriage" and rate of HO by performing follow-up for AS patients with THA.XIII In May2013, we searched PubMed using the MESH terms "ankylosing spondylitis" AND "patient education", ankylosing spondylitis "AND "physiotherapy","nkylosing spondylitis " AND " pharmacotherapy ", ankylosing spondylitis "AND "Nonsteroidal Anti-inflammatory Drug" as well as the MESH "rheumatoid arthritis" AND "patient education". The language was limited with "English". We then analyze the26articles related patient education in AS treatment in aspects of" Sample of study "," Duration of study ","Forms of education" and "Variables of assessment". We also examine the status of the citation of patient version recommendations by searching Google Scholar. ResultMisdiagnoses were reported by69.8%of the patients. The most common alternative diagnoses were "Arthritis associated with rheumatic fever"(AARF)(18.7%) and "Lumbar disc herniation"(LDH)(11.5%). Misdiagnoses resulted in significant diagnosis delay (P<0.001). No statistical differences were detected in BASDAI (t=0.661; P=0.510), BASFI (t=0.832; P=0.407), status of employment (χ2=1.298; P=0.255) and marriage (χ2=3.609; P=0.323) between patients with or without alternative diagnoses.53.2%had taken nonsteroidal anti-inflammatory drugs (NSAIDs).32.5%and7.1%had taken salazopyrine and methotrexate respectively. Thalidomide and leflunomide were respectively used by10.3%and6.3%. Oral glucocorticoids was reported by1.6%. Tramadol was reported by5.6%.50.8%had ever taken Chinese herbal medicine (CHM) for AS.3.2%of the patients were taking TNF-inhibitors regularly while46.0%had a BASDAI≥4.31.4%had not got exercise recommendations.20.7%had got recommendations but without specific exercise type. Swimming was most commonly recommended by clinicians (23.6%) while the most common exercise actually performed by AS patients were home stretching (12.1%) and walking (5.9%). Only27.9%insisted on exercise at least3times per week."Higher levels of physical fitness"(53.0%) was most frequently reported benefit while the most frequently reported barrier to exercise was "it took me too much time"(50.7%). Statistical difference existed in BASFI between patients insisting on exercise at least3times each week and patients with less frequency (t=2.805; P=0.006). No statistical differences were detected in BASDAI and TBPS between the two groups.After THA, AS patients’disease activity got relived in certain extent(t=2.229; P=0.031); their physical function (t=6.674; P<0.001) and ability for daily life (t=18.504; P<0.001)was significantly restored. AS patients’rate of employment was obviously upleveled (x2=8.640; P=0.003). However, their chance of getting married was not improved (x2=2.005;P=0.157). Rate of HO after THA among AS patients (37.9%) was higher than that among patients with DDH (23.6%) but lower than that among patients with ADH (45.7%). After THA, effect of disease on AS patients’life decreased from98.0%to53.3%. The decrease is less than50%.In May2013, we only got26articles published in English language when we searched PubMed using the MESH terms "ankylosing spondylitis" AND "patient education". In the meanwhile, as many as191and289articles were retrieved relatively when we limited the MESH terms as "ankylosing spondylitis " AND "physiotherapy" as well as "ankylosing spondylitis " AND " pharmacotherapy ". Actually, if we use certain specific name of drug as MESH terms, much more reports would be retrieved. For example, as many as327articles could be retrieved when we used the MESH terms "ankylosing spondylitis "AND "Nonsteroidal Anti-inflammatory Drug". The prevalence of RA was reported to be close to the prevalence of AS. Surprisingly, up to374reports could be retrieved when the MESH terms "rheumatoid arthritis" AND "patient education" were used.Among the26articles retrieved with the MESH terms "ankylosing spondylitis" AND "patient education", only8reports have practically applied certain patient education process in AS treatment. Of the8reports, only one report has included200patients while none of the other7studies have included more than100AS patients. None of the8reports persisted more than6months. The majority of the8reports aimed at evaluating the effect of combining patient education with physiotherapy. Effect of combining patient education with pharmacotherapy or surgery has not been explored. Most of the studies focused on assessing physical variables (function or symptom) while psychological variables and status of quality of life need further concern. Face to face education was the most often used form while the other types such as video and booklet were only applied sparsely. No computer and internet assisted educational form for AS was reported in these8studies. AS patients were often educated in group meeting while their individual needs might require more attention. Only one study has included family member (patients’ spouses) in the education.For the purpose of strengthening patients’knowledge and participation in the management of AS, the Assessment of SpondyloArthritis International Society (ASAS) and the European League Against Rheumatism (EULAR) had converted their recommendations for AS management into a patient-understandable version and published the patient version recommendations in the year of2008. Till now, nearly5years have passed, the patient version recommendations have been merely cited by18reports as reflected in the Google Scholar. These18reports included11English papers and7papers written in other languages. Of the11English papers, no one focused on assessing the practical implementation of the patient version recommendations in AS patient education but just cited it to support their own individual viewpoints.There were50patients with JoAS (36.0%) and89with AoAS (64.0%). The JoAS group showed more onset with peripheral joints involvement(χ2=29.433; P<0.001), significant diagnosis delay(t=2.791; P=0.006), worse functional status(t=2.591; P=0.011)and poorer status of quality of life(t=3.495; P=0.001). Patients with JoAS also showed significant lower rate in college education(χ2=4.342; P=0.037) and marriage(x2=6.208; P=0.013). The rate of employment in JoAS group was lower than that in AoAS group. Although the difference in employment had not reached statistical level, the JoAS group included more patients who had never got employed since they reached the age of adult (χ2=5.590; P=0.015). Conclusions(1) This study reflected that the majority of AS patients have the experience of alternative diagnoses and alternative diagnoses could lead to significant diagnosis delay of AS. The impacts of alternative diagnoses on disease activity, physical function, status of employment and marriage are insignificant.(2) As the first-line drug for AS treatment, NSAIDs might be not fully used while sulfasalazine and methotrexate were overused in AS. Although not included in recommendations, certain drugs such as thalidomide, leflunomide and CHM were taken frequently by AS patients. There is a substantial unmet need for TNF-inhibitors.(3) Significantly high percentage of AS patients had not got appropriate exercise recommendations and most of the patients failed to insist on exercise sufficiently. AS patients insisting on exercise at least3times each week have better functional status than patients with less frequency of exercise.(4) After THA, AS patients’disease activity got relived in certain extent.Their physical function and ability for daily life was significantly restored. AS patients’ rate of employment was obviously upleveled. However, their chance of getting married was not improved. Rate of HO after THA among AS patients was higher than that among patients with DDH but lower than that among patients with ADH. After THA, effect of disease on AS patients’life decreased from98.0%to53.3%. The decrease is less than50%.(5) Our results reflected the actual insufficiency of patient education for AS and more concern in this aspect is required definitely. Due to the extreme lack of AS-specific evidence in patient education, experience from other chronic disease such as rheumatoid arthritis may need to be consulted, when we plan to design educational programme for AS patients. (6) The data reflected that early diagnosis of JoAS is an even more severe challenge compared with AoAS and specific diagnosing criteria for JoAS is warranted. Patients with JoAS showed worse functional status than patients with AoAS and more aggressive treatment may be needed for JoAS. Certain interventions to counteract the disease impact on life for AS patients are required, especially for patients with JoAS. |
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