Abstract
In the recent article titled ‘Blockade in the pathway of specialty care in systemic lupus erythematosus: A report based on Indian Rheumatology association database’ by Ghosh et al., 1 the authors have highlighted that the major factors leading to delay in referral to a specialist were lack of awareness about rheumatology or being treated by other specialists.
Early diagnosis is important for a better outcome in most diseases including rheumatic disease and systemic lupus erythematosus (SLE) is no exception. In most rheumatic diseases, it has been shown that patients treated by rheumatologists do better than those treated by other specialists. In a recent study, 2 general practitioner was the first physician of contact but diagnosis in more than 80% of patients was only made by the rheumatologist. Delay in referral to a rheumatologist halved the chance of getting early treatment and resulted in poor outcome. 2 In another study from Germany, in 58% of the cases the diagnosis was changed after evaluation by the rheumatologist. 3
It seems very odd that in a developing country with limited access to health care, the median delay in referral to a specialist was only 1 [1-480] month. In most previous studies, including those from the developed world, the median diagnostic delay for SLE varies from six months to two years. In Europe, it is approximately two years and in France it is nearly one year. 4 Even in India, the study done by SLE special interest group (SIG) found that the median delay in diagnosis in patients diagnosed at tertiary care hospitals across India by the rheumatologist was six months. 5
Why is this different in this study? Is it due to selective inclusion of patients? We are not sure if all consecutive patients were enrolled during a certain time frame, if that is not so, then it is possible that severely sick patients presenting late may have been excluded. Though the Indian Rheumatology Association (IRA) database had 833 patients with SLE but only 786 were included in the study, this could have excluded patients with longer delays in referrals. In the prospective inception cohort from India, the median delay in referral to specialty centre after the onset of symptoms was 11 months. The Indian SLE inception cohort for research (INSPIRE) database had patients enrolled consecutively, from both inpatient and outpatient settings. 6
In this study, the definition of delay in referral to a specialist is not clear as the median duration of symptoms of SLE was 72 months but the median duration of referral delay to a specialist was only 1 month. At what stage in illness were the patients enrolled in the study? If patients were interviewed late in the illness, then recall bias can arise.
Is it that most centres that contributed data had a private care setting where patients pay from the pocket and are likely to be from a higher socioeconomic strata of society? This is also supported by their data showing a weak association between socio-economic (SE) status and delay in diagnosis. The SLE SIG group study also found that patients with higher SE status and those belonging to Southern India had lesser delay in diagnosis. 5 Though India is one country, it is highly diverse as regards education, employment, income and social fabric. Thus, we need to have data from rheumatologist working in different setting like tertiary care hospitals, medical colleges and district hospitals to know what is the real scenario.
The other aspect of this study is the reasons for late referrals (defined as more than six months) and the most common reasons cited are being managed by other specialties and not being aware of the specialty which are both linked to each other. The others were wrong diagnosis by primary care physicians and reluctance to refer to a rheumatologist. Patients are usually unaware of the reasons why a physician does not refer to a specialist. Doing a survey of the referring physician to ascertain the authenticity of the information provided by the patient would have given more confidence in this data.
SLE is a multisystem disease and patients with predominant mucocutaneous, haematological or renal disease are often seen by their respective specialty. Some of the patients have a single organ involved for many years before another organ gets involved. Have the authors considered these patients also in late referrals even if the diagnosis of SLE has been made and appropriate treatment given by another specialist? Inclusion of this data would inflate the delay in referral.
Delays in diagnosis can impact both mortality and long-term damage. It would have been helpful to know if longer delays led to more damage. The early mortality in SLE almost reaches that seen in some of the malignant conditions like lymphoma, etc. 7 The rheumatologist in their part need to lobby with the government to include SLE in the women and child health programme as it has major impact on the women. The prevalence of SLE being nearly 1 in 1,000, India, must be having more than a million patient with SLE.
Despite all these lacunae the authors need to be complimented for bringing this issue to the foray and showing that India at least in part is doing great with more than 50% of patients being diagnosed with SLE before six months. What is the way forward for better care of patients with SLE? India needs a good referral system with ASHA workers in the community being the first point of contact followed by a general physician, district hospital, medical college and then a tertiary care hospital. In Southern India most districts have trained rheumatologist, while the situation in other parts of India is not so. There is a significant knowledge gap about rheumatology in undergraduates with most not being confident about rheumatic diseases. 8 Including rheumatology in the undergraduate and postgraduate curriculum will go a long way in improving referral pathways as well as early diagnosis. 9 Along with this, the public needs to be made aware of autoimmune disease like other chronic diseases (diabetes, hypertension, obesity, fatty liver). We owe to our young patients that a proper referral system evolves to make their life better.