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ORIGINAL ARTICLE
Ahead of print publication  

Axial spondyloarthritis in India: determining the delay in diagnosis, impact on work productivity, and attitude of patients toward treatment


1 Department of Clinical Pharmacy, Poona College of Pharmacy, Bharati Vidyapeeth Deemed to be University, Pune, Maharashtra, India
2 Apex Center of Rheumatology, Pune, Maharashtra, India

Date of Submission21-Dec-2019
Date of Acceptance19-Aug-2020

Correspondence Address:
Pravin Patil,
Apex Center of Rheumatology, Pune - 411 004, Maharashtra
India
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/injr.injr_190_19

  Abstract 

Background: Axial spondyloarthritis (axSpA) primarily affects young, working demographics, and impacts on work productivity. Here, we aimed to determine the delay in diagnosis of axSpA, assess the impact on work productivity, and explore patients' perception of available treatment options.
Methodology: A cross-sectional study was conducted on 100 axSpA patients who fulfilled the ASAS criteria. Ethical approval was obtained. Data regarding disease duration, delay in diagnosis, and other demographics were collected using an investigator-designed questionnaire. Disease activity, quality of life, and loss in work productivity were determined using standardized scales.
Results: Median disease duration and delay in diagnosis were 5 years (interquartile range [IQR]: 2.0, 10.0) and 2 years (IQR: 0.5, 5.0), respectively. Median Bath Ankylosing Spondylitis Disease Activity Index, Bath Ankylosing Spondylitis Function Index, Bath Ankylosing Spondylitis Global, and Ankylosing Spondylitis Quality of Life scores were 4.15, 3.00, 4.00, and 8.00 respectively. Three different specialists were visited by 58% of the patients before reaching a rheumatologist. An incorrect clinical impression was made in 69% of the patients before consultation with the rheumatologist. Median presenteeism and impact on work productivity reported were 20% and 20.34%, respectively. Eight percent of the patients had to cease employment due to debilitating consequences of axSpA. Daily activities were affected up to 40%. A misconception that “allopathic medications cause side effects in all axSpA patients” was held by 58% of the patients and 25% of the patients believed that doctors deliberately conceal side effects of medications.
Conclusion: A patient referral pathway for axSpA should be established to avoid the visits to multiple specialists. AxSpA not only reduces work productivity but also leads to work disability. There is a need to address the patient's concerns regarding modern medicine so that their health-seeking behavior is improved.

Keywords: Diagnostic delays, misconceptions, modern medicine, referral pathway, work proficiency



How to cite this URL:
Reddy KN, Raut A, Patil P. Axial spondyloarthritis in India: determining the delay in diagnosis, impact on work productivity, and attitude of patients toward treatment. Indian J Rheumatol [Epub ahead of print] [cited 2020 Oct 30]. Available from: https://www.indianjrheumatol.com/preprintarticle.asp?id=298048




  Introduction Top


Axial spondyloarthritis (axSpA) is a chronic inflammatory condition which mainly affects the axial skeleton but can also involve other joints.[1] There is a wide variation in global prevalence of ankylosing spondylitis (AS). A recent update on epidemiology has been published.[2] The reported prevalence rate of AS in Asia is 167 per 10,000.[3] The prevalence of AS in India ranges from 0.03%[4] to 0.2%.[5]

Delayed diagnosis of axSpA is a globally recognized problem. A delay in diagnosis on an average of 5.99 years was observed in North Indian axSpA patients.[6] Delayed diagnosis and treatment can cause irreversible structural damage which, consequently, can affect patients' mobility and quality of life (QoL). Moreover, patients with shorter disease duration are more responsive to the treatment compared to longer disease duration.[7]

The impact of axSpA on patient's work productivity is often overlooked. A loss in productivity can include increased sick leave and eventual withdrawal from employment.[8] Currently, there are no Indian studies that describe the impact of axSpA on work productivity and patient's perspective toward the available treatment options. Owing to its cultural and social differences in work environment, lack of health schemes, and social security, the relationship between workplace disability and the liaison among employees might be unique in India.[9]

There are various barriers in the early treatment initiation of axSpA. Use of complementary and alternative medicines (CAM) is relatively common in India. A WHO study identified that the use of traditional medicines was highest in India as compared to other nations.[10] Easy availability, friend and family support for the use of CAM, socioeconomic status,[11] and fear of the side effects of allopathic medications[12] are associated with high usage of CAM among Indians. Factors that influence and encourage the use of CAM treatment in axSpA must be identified to ensure that patient concerns can be addressed at thefirst point in contact with modern medicine specialist. Furthermore, there is a lack of a structured patient referral pathway in India. Often, patients decide themselves which healthcare professional they should seefirst. Some patients directly contact specialists, and many do not go beyond a general practitioner (or even a pharmacist).[13] Patients often end up meeting multiple doctors and walk directly into tertiary care centers for the treatment.[14] This often leads to unnecessary investigations, delayed treatment, and increase in the economic burden on patients.[15]

The primary objective of this study was to determine delay in diagnosis of axSpA and evaluate impact on work productivity. The secondary objective was to assess the patient perceptions of modern medicine in an Indian population.


  Methodology Top


A cross-sectional study was conducted on axSpA patients attending our rheumatology clinic between May and August 2019. Convenient sampling methods were implemented to include 100 patients. All patients who were older than 18 years and satisfied the ASAS classification criteria for axSpA[16] were included in the study. Patients suffering from concomitant rheumatic disorders such as rheumatoid arthritis (RA) and/or Systemic lupus erythematosus (SLE) were excluded from the study. A face-to-face interview was conducted for each patient and an investigator-designed structured questionnaire was used for collecting all the data. Written informed consent was obtained from all participants. The study received ethical approval from Institutional Ethics Committee of Bharati Vidyapeeth (Deemed to be University) Medical College, Pune vide letter BVDUMC/IEC/59 dated July 27, 2020.

Patients characteristics

Demographic data related to gender, age at symptom onset, and delay in diagnosis, time to reach a rheumatologist, employment status, and social history (e.g., tobacco consumption) and the presence of extraspinal manifestations (ESMs) were collected. The time at which thefirst symptom of axSpA experienced was termed as the age of disease onset. Delay in diagnosis indicates the time betweenfirst spondyloarthritic symptom onset and correct diagnosis of axSpA.[17],[18] Time to reach a rheumatologist refers to the interval between symptom onset andfirst visit to a rheumatologist. The treating doctor was considered as the rheumatologist after looking at the old medical records brought by the patient. In all cases, the rheumatologist or consultant rheumatologist was mentioned in their title. They were all postgraduate in general medicine with or without formal qualifications in rheumatology. Duration of the disease indicates the time from symptom onset to when the study data were collected. Data regarding thefirst point of contact after symptom onset, number of specialists visited and diagnosis received if any, before reaching a rheumatologist and pathway of referral to a rheumatologist were collected.

Clinical data

Patients were asked to complete various forms including Bath Ankylosing Spondylitis Disease Activity Index (BASDAI),[19] Bath Ankylosing Spondylitis Function Index (BASFI),[20] Ankylosing Spondylitis Quality of Life (ASQoL),[21] and Bath Ankylosing Spondylitis Global (BASG).[22]

Patient perspective

To assess the patient perspectives regarding available treatment options in India, information on use of CAM (current and past status), reason for stopping medications, duration of therapy, misconceptions about side effects of drugs used in modern medicine, and level of awareness about newer therapies was obtained by face-to-face interview.

Impact on work productivity

Impact of axSpA on work productivity was studied using the Work Productivity and Activity Impairment (WPAI) questionnaire.[23] Presenteeism, absenteeism, and overall impact on work productivity and daily activities were evaluated. WPAI-AS has six sets of questions: (Q1) employment status, (Q2) number of hours missed due axSpA-related health (absenteeism), (Q3) number of hours missed due to reasons other than your health condition, (Q4) number of hours actually worked, (Q5) overall effect of axSpA on work (visual analog scale [VAS]: 0–10, where 0 is no effect and 10 being unable to work), and (Q6) overall effect of daily activities (VAS: 0–10, where 0 is no effect and 10 being unable perform any activities). Patients who are unemployed directly skip to Q6. Presenteeism (impairment while working due to axSpA) was calculated as (Q4 ÷ 10), absenteeism was calculated as (Q2÷ [Q2 + Q3 + Q4]), and the overall impact on work productivity was determined using the formula: {[Q2÷ (Q2 + Q3 + Q4)] + [1− (Q2)] ÷ (Q2 + Q3 + Q4) × Q5/10}. The impact on daily activities was calculated as (Q6 ÷ 10). All values were then converted to percentages.

Statistics

Data were processed with Microsoft Excel for analysis. SPSS Version 20.0 software SPSS version 20.0 (Armonk, NY: IBM Corp) software was used for statistical analysis, was used for statistical analysis. Normality of data was checked using Shapiro–Wilk test. Taking the median delay in diagnosis as cutoff, patients were classified as having early diagnosis and late diagnosis.[18] For normally and nonnormally distributed data, variables were presented as mean with standard deviation (SD) and median with interquartile range (IQR), respectively. Normally distributed data were compared using a Student's t-test and nonnormally via nonparametric tests. A Mann–Whitney test was used for clinical comparisons among two groups and Kruskal–Wallis test for more than two groups. In the case of a significant difference discovered by the Kruskal Wallis test, a post hoc analysis (Bonferroni method) was employed to determine the P value for each of the parameters compared. Chi-square test was used for categorical data. Data were considered statistically significant if P < 0.05.


  Results Top


A total of 100 patients participated in this study. In our cohort, 68% of the patients were male and the male-to-female ratio was 2.1:1. [Table 1] illustrates patient cohort demographic and clinical characteristics. Males were significantly younger in age at the time of the symptom onset (P < 0.05). The average delay in diagnosis was 3.53 years (median 2 years [IQR - 0.5, 5.0 years] and SD - 3.93 years). The delay was significantly more in females (P < 0.05).
Table 1: Demographic and clinical features of the study population

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ESMs were observed in 46% of the total study population, among which 48.5% (n = 33 out of 68) were male and 40.6% (n = 13 out of 32) were female [Table 1]. We found no significant difference in the presence of ESM between male and female (P = 0.429). Furthermore, no significant association between delay in diagnosis, disease duration, and delay in reaching rheumatologist with the presence of ESM was observed.

[Table 2] compares the clinical features of the patients with early and late diagnosis. The median cutoff for diagnostic delay in this cohort was 2 years. Hence, patients diagnosed within 2 years of symptoms onset were classified to have “early diagnosis” and after 2 years as “late diagnosis.” The median scores for impact on work productivity and daily activities were higher among patients with late diagnosis, though this was not statistically significant. ASQoL scores were also elevated among patients in the “late diagnosis” group.
Table 2: Clinical features of patients with early and late diagnosis of axial spondyloarthritis

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For 58% of the patients, thefirst point in contact at symptom onset was an orthopedic doctor followed by a physician (14%), rheumatologist (12%), general practitioner (10%), neurologist (4%), and physiotherapist (2%). About 69% of the patients had received an incorrect clinical impression before consulting a rheumatologist. A variety of incorrect clinical impressions received by patients are represented in [Figure 1]. AxSpA was correctly diagnosed by nonrheumatologists in 31 patients, wherein 23 patients were diagnosed by orthopedists followed by general practitioner (n = 7) and physician (n = 1). More than half of the study population (58%) visited at least 2–3 specialists for their symptoms before consulting a rheumatologist, and 16% of the patients visited 4–5 specialists before referral to a rheumatologist. Data regarding specialists visited are presented in [Figure 2]. In our cohort, the majority of patients (49%) reached a rheumatologist via referral from a medical professional. Other pathways of reaching a rheumatologist were via the internet and reference from other patients.
Figure 1: Diagnosis provided by nonrheumatologists. Only 31 patients were correctly diagnosed as axial spondyloarthritis by nonrheumatologists. Remaining patients were given incorrect clinical impression. Other diagnosis given were sciatica, mechanical injury, pregnancy-induced back pain, spur, osteoporosis, myalgia, neuropathy, and back pain due to exercise

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Figure 2: Various specialists visited before reaching a rheumatologist. Patients visited different specialists for seeking correct diagnosis and relief of symptoms before consulting a rheumatologist. The majority of patients have seen an orthopedician at some point in their

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The present study also assessed the impact of axSpA on work productivity. About 57% of the patients were employed, 18% were homemakers, and 17% were full-time students. Eight percent of the patients experience impairments to work due to axSpA and had to terminate the employment. The work disability in these patients was mainly a result of severe disease, which caused physical disability in the form of kyphosis and osteoarthritis of hip or knee joint. In the employed population of patients, the majority (89%) held sedentary office jobs. Twenty-six percent (n = 15) of the patients lost an average of 4.5 working days per month due to axSpA. Out of 57 employed patients, 41 patients did not report any absenteeism from work. The average absenteeism reported by 16 patients was 21.78% (range: 1%–99%). All the employed patients were divided into four groups and compared based on the impact on work productivity [Table 3]. All the disease activity scores were significantly higher among patients who were unable to work due to axSpA, compared to those patients who experienced little or no impact to their employment. Disease duration was highest among patients who were unemployed due to axSpA.
Table 3: Impact of axial spondyloarthritis on work productivity

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Forty-three percent of the patients had tried CAM such as Ayurvedic and Homeopathy, of which 7% of patients were still taking CAM along with allopathic medications. In 20% of these patients, medications were not prescribed by qualified doctors of Ayurveda or Homeopathy. Ayurvedic treatment was the preferred option (60%), followed by Homeopathy (16%), and 18% of the patients had utilized both in combination. There was no gender or age bias for choosing CAM (41% in males VS. 46% in females). Patients who tried CAM had significantly longer disease duration (median [IQR]: 8.00 [3.0, 12.0] vs. 3.00 [1.0, 6.0], P = 0.001]) and delay in reaching the rheumatologist (median [IQR]: 4.00 [2.0, 10.0] vs. 2.00 [0.5, 4.5], P = 0.001]), as compared to patients who have not tried CAM. Twenty-seven percent of the patients reported switching to modern medicine due to the lack of efficacy of CAM. Four percent of the patients terminated therapy as they experienced side effects, whereas 5% of the patients reported that they found it too difficult to adhere to dietary restrictions associated with CAM. A common misconception that “allopathic medications cause side effects in all axSpA patients” was present in 58% of the patients. Twenty-five percent of the patients believed that doctors conceal side effects of medications, and 71% of the patients were not willing to continue modern medicine for a long time even if it is advised by their rheumatologists. This was primarily due to a fear of side effects from long-term therapy. Seventeen percent of the patients believed that axSpA could be entirely cured by CAM.


  Discussion Top


Our study explored three crucial aspects of axSpA in an Indian context: diagnosis delay, impact on work, and outlook toward modern medicine. Early and correct diagnosis of disease can substantially reduce disease progression and severity. In the present study, median delay in diagnosis was 2 years, with women having significantly longer delay in diagnosis. The mean delay in diagnosis in axSpA as reported from western, northern, and southern parts of India ranged from 5 to 7.5 years.[24] Although the average delay in diagnosis was somewhat reduced in the present study, it was still higher than the delay in diagnosis for RA.[25] Data of the present study indicate that delayed diagnosis leads to further delay in reaching a rheumatologist and commencing treatment for axSpA.

As expected, in India, an orthopedician was thefirst point in contact for the majority of patients.[26],[27] A small number of patients directly visited a rheumatologist for initial assessment. This reveals the lack of awareness about nonmechanical causes of back pain among the general population. Moreover, there are an insufficient number of rheumatologists in India.[15],[26] Orthopedicians are widely available and hence more accessible. Despite the majority of patients' initial visit being to specialist rather than primary care doctor, only 31% of the patients were correctly diagnosed by nonrheumatologist. Effective screening tools exist for axSpA. However, the implementation of these tools in routine clinical practice is poor in countries like India. Most correct diagnoses were made by rheumatologists, followed by orthopedists, similar to that observed by Aggarwal et al.[18] Dincer et al. identified that the inability of nonrheumatologists to recognize symptoms of AS led to delay of diagnosis.[28] In the present study, the most common incorrect clinical impression (n = 29) given was nonspecific back pain, followed by RA (n = 11). This may be due to confusion between RA and AS among nonrheumatologists.[29] A survey of 1690 nonrheumatology healthcare providers in the USA revealed that most healthcare professionals suspected RA to be the underlying cause (94%) in patients with inflammatory back pain.[30] This indicates overall lack of knowledge of musculoskeletal diseases among healthcare professionals. The majority of patients in our study visited, on average, 2–3 specialists. This increases patient anxiety and adds a further economic burden to patients. To increase the rates of correct diagnosis and referral rates, there is a requirement for more effective continuing medical education, especially among orthopedics and general practitioners. The nonrheumatologists need to be educated regarding age of onset and type of back pain as these two are the most important considerations as part of differential diagnosis.[31]

Various studies have highlighted the significant impact that AS and axSpA have on work productivity.[32],[33],[34] In our cohort, eight patients had to cease employment due to work disability caused by axSpA. It has been reported that withdrawal from work increases threefold in AS patients, compared to the general population, and employment withdrawal rate grows as disease duration increases.[32] In the present study, disease duration and delay in visiting a rheumatologist were longer in patients who had to withdraw from employment. This observation is consistent with the findings from Ramonda et al., who identified that unemployment in axSpA is associated with longer disease duration, functional impairment, and older age.[34] Our data did not indicate an association between old age and unemployment, as most of the employed patients participated in the study were younger. BASDAI, BASFI, and BASG scores were significantly higher among patients who had experienced increased negative impact on work productivity, similar to an observation made by Boonen et al.[35]

Indian patients with AS have a poorer QoL as compared to RA patients, as well as the general population. Moreover, this is associated with poor control of disease activity.[36] Patients who had to cease work had a significantly higher ASQoL than patients still employed. Poor QoL as a result of high disease activity could further reduce work productivity and produce further decreases in QoL, thereby creating a vicious cycle. Inability to work has severe consequences for both the patient and his/her family in terms of financial hardship and loss of self-esteem. Depression is another condition which is associated with unemployment.[33] In India, there are no clear work disability benefit policies for axSpA patients. In the present study, the median absenteeism reported by patients who experienced more impact (>50%) on work productivity was 10.63%. This is more than an Italian study that identified 7.9% absenteeism.[37] One explanation for higher absenteeism in the present Indian study would be longer disease duration compared to the Italian study (5 vs. <2 years). A Dutch study reported higher absenteeism (28%) compared to the present study. They had longer disease duration (10 vs. 5 years in the present study).[38] This suggests that longer disease duration has a greater impact on patients work productivity. The majority of our patients had sedentary office jobs, with their symptoms making it difficult for them to sit in one place or position for extended periods of time. Patients may not openly discuss their disease condition with colleagues due to the fear of discrimination in the workplace. Reducing delayed diagnosis, increasing disease awareness, increasing communication among patients and physicians, and focusing on patients priority for the treatment goals may help improve patient outcomes.[39] There are various stakeholders such as patients, families, rheumatologists, and government, and each has a specific role to play for the betterment of patient's QoL.

Patients in India often choose CAM therapies as afirst-line treatment due to fear of side effects from modern medicine. There is also a greater belief in CAM among Indian patients. Many patients opt for CAM as thefirst-line therapy because they believe that it is safer, more effective, and economical.[11] However, data from the present study indicate that patients are not aware that they lose valuable time by delaying conventional therapy. In our study, 58% of the patients believed that allopathic medications cause side effects in all axSpA patients. Twenty-five percent of the patients had perception that doctors conceal side effects of medications, and 71% of the patients were not willing to continue modern medicine over the long term, even if advised by their rheumatologists.

There are various limitations of our study. One limitation was the use of convenient sampling due to lack of a prior sample size calculation. The absence of control group does impose some limitation to our data interpretation. Another important limitation of our study is the recall bias with respect to symptom onset and duration of disease as our data relied on patient memory and self-report. The data regarding specialists visited and diagnosis provided were collected from available patient records and from information provided by them. Furthermore, the information on work absenteeism was recorded as reported by the patient. Ideally, this would be verified from the employer, in order for quantification. We acknowledge that the information provided by the patients can be subjective and varies due to various factors. Our study also included a variety of questionnaires which had to be completed by patients. This may cause fatigue resulting in approximate answers. In addition, it would be interesting to study the differences between radiographic and nonradiographic axSpA.


  Conclusion Top


There is an unacceptable and damaging delay in the diagnosis of axSpA. Many patients only reach rheumatology clinics after seeing multiple specialists, which contributes to the long diagnostic delay. Unsurprisingly, a longer disease duration and delay in reaching a rheumatologist was more common in patients who experienced heightened difficulties in work productivity. Opting for CAM resulted in a longer delay in reaching a rheumatologist. Fear of adverse effects of modern medicine and greater belief in CAM therapy are important barriers in early treatment initiation. Being thefirst point in contact in the majority cases, awareness at the level of orthopedicians should be deepened. Moreover, there is a requirement to find methods of elucidating available information regarding modern medicine to address patient's concerns and improve their health-seeking behavior.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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    Figures

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