|Year : 2018 | Volume
| Issue : 2 | Page : 101-106
Poor quality of life in indian ankylosing spondylitis patients
Latika Gupta1, Sakir Ahmed1, Gautam Dhar Choudhury2, Durga Prasanna Misra1, Vikas Agarwal1
1 Department of Clinical Immunology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India
2 Department of Rheumatology and Clinical Immunology, Command Hospital, Lucknow, Uttar Pradesh, India
|Date of Web Publication||24-May-2018|
Dr. Latika Gupta
Department of Clinical Immunology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow - 226 014, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
Background: Ankylosing Spondylitis (AS) is a chronic inflammatory disease that leads to significant disability. We sought to study the impact of the disease activity and functional impairment on QoL in Indian patients with AS.
Methods: World Health Organization- Quality of Life-BREF (WHOQoL-BREF) questionnaire was used to measure quality of life (QoL) in 99 adults with AS (modified Rome criteria), 72 healthy individuals, and 20 rheumatoid arthritis patients. Apart from demographic variable such as age, gender, clinical manifestations, and treatment received, disease activity parameters such as duration of early morning stiffness, BASDAI, swollen and tender joint count, Erythrocyte Sedimentation Rate (ESR) and C Reactive Protein (CRP) were also recorded. Presence of damage was assessed using spinal radiographs. All values are in median (IQR).
Results: Out of the 99 patients, 5 were females and 5 had juvenile onset AS. Median age was 32 (26-42) years and median disease duration was 6 (1.25-10) years. Forty-three had peripheral arthritis and 18 had enthesitis. Syndesmophytes were present on spinal radiographs in 54 cases. BASDAI correlated negatively with the physical, psychological and environmental domains (P < 0.05), while BASFI and BASMI did not. In all 4 domains of WHO-BREF, scores for AS were significantly less as compared to healthy controls [P < 0.0001] or even to rheumatoid arthritis [P < 0.01].
Conclusion: Indian AS patients have poorer quality of life than patients with rheumatoid arthritis and healthy individuals, possibly due to poor control of disease activity.
Keywords: Disability, quality of life, spondyloarthropathy
|How to cite this article:|
Gupta L, Ahmed S, Choudhury GD, Misra DP, Agarwal V. Poor quality of life in indian ankylosing spondylitis patients. Indian J Rheumatol 2018;13:101-6
| Introduction|| |
Ankylosing spondylitis (AS) is a common chronic rheumatic disease of adults that primarily affects the axial skeleton. Chronic inflammatory back pain with early morning stiffness is the clinical of hallmark AS. Nonsteroidal anti-inflammatory drugs (NSAIDs) are the first line of therapy in AS. Although these are effective in a large majority, they reduce symptoms by only 50% in most cases. Hence, most individuals suffer from residual stiffness and pain despite NSAIDs, leading to compromised quality of life (QoL). Since most affected individuals are young, the disease results in deteriorated academic and professional performance and consequently poor mental health.
Apart from poor QoL due to active disease, it can also be a surrogate for damage. Advanced disease is marked by spinal ankylosis. Loss of lumbar lordosis and thoracic kyphosis, with cervical fusion and consequent immobility, results in the classical question mark posture. Apart from this, recurrent attacks of uveitis can adversely affect vision. Anemia due to chronic disease and inflammatory bowel disease contribute to fatigue and poor work capacity.
Despite the multifaceted effects of disease, poor QoL in AS remains largely ignored by the physicians and the society. Most patients in our country cannot afford biologics, which can improve not only physical and functional outcomes but also QoL  AS is often not listed in the list of diseases covered by insurance agencies. Thus, it is important to evaluate disability in young population consequent to the disease and generate data to prompt measures by the community for the greater benefit of patients and the society.
World Health Organization QoL Scale (WHOQOL-BREF) is a validated tool to assess QoL. The WHOQOL-BREF questionnaire is an abbreviated version of the WHOQOL-100. The latter was developed by the WHOQOL group with 15 international field centers and is applicable cross-culturally. It was disadvantaged by lengthy nature; hence, WHOQOL-BREF tool has come into routine use. The WHOQOL-BREF contains a total of 26 questions, wherein 24 are derivations from the original version. The other two items assess an individual's overall perception of QoL and of their health. Four domain scores scaled in the positive direction (i.e., higher scores denote higher QoL) are yielded by mean of the questions in each domain. The domain scores are eventually multiplied by four to make them comparable with the scores used in the WHOQOL-100. Since no studies have evaluated QoL in AS from our country, we aimed to look at the same in our cohort of AS patients.
| Methods|| |
Ninety-nine consecutive patients of AS fulfilling modified New York (NY) criteria were enrolled after written informed consent as part of this cross-sectional cohort study. Information regarding demographic details and disease-related clinical data was captured. Clinical data included the duration of disease, treatment received and the presence of uveitis, enthesitis, and peripheral arthritis. Relevant blood investigations and radiographs data were also collected. The disease activity indices, namely Bath AS Disease Activity Index (BASDAI), Bath AS Functional Index (BASFI), and Bath AS Metrology Index (BASMI) were recorded.
To measure QoL, WHOQOL-BREF self-administered questionnaire was used. This is a 24-facet questionnaire consisting of four separate domains: physical health, psychological, social relationships, and environment. It is a validated tool, and the Hindi translation has also been validated.
Seventy-two healthy age- and gender-matched individuals were taken as healthy controls, and twenty rheumatoid arthritis (RA) age and sex similar patients were taken as diseased controls. All the values are expressed in median (interquartile range). Statistical analysis was carried out using GraphPad software version 7 for Mac (trial version).
The study was approved by the ethics committee of both the institutes. Informed written consent was obtained from all patients prior to their enrollment in this study.
| Results|| |
Of the 99 patients, five were females and five had juvenile onset AS. Median age was 32 (26–42) years and disease duration was 6 (1.25–10) years. All case had inflammatory back pain, whereas 43 had peripheral arthritis and 18 had uveitis. Enthesitis was present in 18 cases. Fifty patients had shoulder involvement and 63 had hip disease. Neck pain was present in fifty cases. Radiographic and disease activity parameters are enlisted in [Table 1]. Ninety-six patients were on NSAIDs, whereas 17 were on sulfasalazine and 7 on methotrexate. Three patients were on Infliximab and 11 on pamidronate [Table 1].
|Table 1: Radiographic and clinical disease activity parameters in ankylosing spondylitis (n=99)|
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Sixty-five healthy males and seven females with median age 32 (19–39) years assessed for comparison. Twenty RA (18 male and 2 female) patients with median age 49.25 (51.5–62.25) years were also asked to fill up the questionnaire.
Median scores of AS patients were 44 (38–63), 50.3 (31–69), 56 (50–75), and 50 (38–63) in the physical, psychological, social, and environmental domains, respectively [Figure 1].
|Figure 1: World Health Organization-BREF scores for ankylosing spondylitis as compared with RA and healthy adults|
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BASDAI correlated negatively with the physical, psychological, and environmental domains of the WHOQOL-BREF questionnaire (P < 0.05) [Figure 2], [Table 2] and [Table 3], whereas BASFI and BASMI did not [Figure 3] and [Figure 4].
|Figure 2: (a) Correlation of Bath Ankylosing Spondylitis Disease Activity index with physical health, (b) Correlation of Bath Ankylosing Spondylitis Disease Activity index with psychological health, (c) Correlation of Bath Ankylosing Spondylitis Disease Activity index with social health, (d) Correlation of bath Ankylosing Spondylitis Disease Activity index with environmental health|
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|Table 2: World health organization BREF quality of life domains in different patient groups|
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|Table 3: Correlation of ankylosing spondylitis disease activity measures with domains of quality of life|
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|Figure 3: (a) Correlation of Bath Ankylosing Spondylitis Functional Index with physical health, (b) Correlation of Bath Ankylosing Spondylitis Functional Index with psychological health, (c) Correlation of Bath Ankylosing Spondylitis Functional Index with social health, (d) Correlation of Bath Ankylosing Spondylitis Functional Index with environmental health|
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|Figure 4: (a) Correlation of Bath Ankylosing Spondylitis Metrology index with physical health, (b) Correlation of Bath Ankylosing Spondylitis Metrology index with psychological health, (c) Correlation of Bath Ankylosing Spondylitis Metrology index with social health, (d) Correlation of Bath Ankylosing Spondylitis Metrology index with environmental health|
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In all four domains of WHO-BREF, scores for AS are significantly less as compared to healthy controls (P < 0.0001) or even to RA (P < 0.01) [Figure 1] and [Table 2]. The Mean DAS 28 score for RA patients was 3.53 ± 0.69 (range: 2.4–4.2), median being 3.2.
| Discussion|| |
We observed that patients with AS have poorer QoL as compared with healthy controls as well as RA. Interestingly, disease activity in AS correlated negatively with the physical, psychological, and environmental domains of WHOQOL, whereas BASFI and BASMI did not.
Poor QoL in AS has been documented in previous reports.,, Most studies have explored QoL using AS-specific measures such as ASQol and EsiQol., Hyphantis et al. used WHO QOL-BREF and found similar results across most domains. Interestingly, their patients fared better in the physical QoL domain scores as compared with our cohort. These findings occurred despite the fact that median age was almost 10 years higher than in the current study. Most cases in their study also had long-standing disease, with median of 15 years, as compared with 6 years in the present study. The high median BASDAI scores suggest that most patients in the present study had poorly controlled disease. This could be attributed to the fact that almost 90% of cases in the former were on biologics, as compared with three in ours. Although NSAIDs have some disease-modifying effects in AS, they are known to provide partial relief, and breakthrough flares while on NSAIDs have been described., Biologics significantly improve QoL in AS patients. Most patients in our cohort could not afford biologics and were managed with NSAIDs and physiotherapy.
In addition, AS patients are poorly compliant with therapy as compared with other rheumatic diseases. The side effects of NSAIDs such as renal toxicity, in particular, are widely known to all. Fear of adverse drug effects with allopathy and greater belief in unconventional medicine such as homeopathy, Ayurveda, and Unani is prevalent in India. Thus, Indian AS patients may have a tendency to restrict NSAID usage, resulting in poor control of disease activity. Although they seem to cope with flares with intra-articular glucocorticoids and additional immunosuppressants, the poor QoL in this study signifies need for better therapies.
NSAIDs have also shown to have disease-modifying effects to some extent in AS, although formal damage assessment in Indian AS patients has never been compared with other ethnicities. It seems plausible that Indian AS patients suffer from poor QoL due to both, inadequate disease control as well as higher damage as compared to those in other countries.
On the other hand, when looking at QoL in AS versus RA, results across various studies have been disparate. A from Taiwan study compared both and found lower physical and mental scores in RA. Mental component is affected by disease knowledge and higher education results in poorer mental health in patients with disabilities from chronic pain., Hyphantis et al. found no difference between QoL in RA and AS patients after confounder effects were removed. However, parameters such as education, socioeconomic status, smoking status, and comorbid variables were not explored in this study.
Since BASDAI correlated with poor outcomes, it shows that in our country, poor QoL is consequent to inadequate disease control in most cases rather than damage. Hence, better measures to control disease activity may be fruitful. This can be achieved in numerous ways. Raising awareness among physicians and general practitioners about the disease can facilitate early diagnosis and prompt referral to the rheumatologist. Early use of DMARDs and biologics in those with poor response to therapy can lead to better control of disease activity. Setting up of patient support groups for better mental health may be useful. Recent literature has brought to light a significant association of fibromyalgia with AS, more so in females. Physiotherapy units for group exercise therapy can improve disease activity as well as address the latter component and hence improve the QoL in AS. Larger and long-term studies can bring this to the attention of the financial implementers and suggest the inclusion of coverage for AS in insurance schemes.
AS also poses a significant economic burden on patients consequent to recurrent hospitalizations, sickness absenteeism, and unemployment. The society suffers from loss of productivity as most patients belong to the working age group in the population. Although AS is a common rheumatic disease with more than 4 million patients in Asia alone, few studies have explored relationships between clinical outcomes and QoL measures.
To the best of our knowledge, this is the first study from India looking at health-related-QoL in AS patients on NSAIDs therapy. It offers the true picture of the disease burden in terms of deterioration in QoL. However, we did not assess quantitative measures of damage such as radiographic scores. The study used NY criteria for selection, signifying advanced disease, which could have a bearing on the QoL in these individuals. Confounding variables such as education and comorbidities were not assessed. It may be worthwhile looking as disease-specific QoL measures and correlate them with conventional disease activity measures in a long-term follow-up study of larger sample size.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3], [Figure 4]
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