|LETTER TO EDITOR
|Year : 2017 | Volume
| Issue : 1 | Page : 56-57
Survey of current practice of scleroderma management in India
GC Yathish1, Ramesh Jois2, Dharmanand G Balebail3, Vinod Ravindran4
1 Department of Rheumatology, Columbia Asia Hospital, Bengaluru, Karnataka, India
2 Department of Rheumatology, Fortis Hospital, Bengaluru, Karnataka, India
3 Department of Rheumatology, Sakra World Hospital, Bengaluru, Karnataka, India
4 Centre for Rheumatology, Calicut, Kerala, India
|Date of Web Publication||23-Feb-2017|
G C Yathish
Columbia Asia Hospital, Whitefield, Varthur Kodi, Bengaluru East Taluk - 560 066, Karnataka
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Yathish G C, Jois R, Balebail DG, Ravindran V. Survey of current practice of scleroderma management in India. Indian J Rheumatol 2017;12:56-7
Systemic sclerosis (SSc, scleroderma) is a rare disorder characterized by fibrosis of skin and visceral organs. Due to rarity of the disease and the popular perception of a difficult to treat disease, there is wide variation in the clinical practice across geographic regions.
To appraise the present clinical practice prevailing across the country, we conducted a questionnaire-based cross-sectional survey during the International Scleroderma Symposium held at Bengaluru, on 16th and 17th July 2016. The questionnaire covered four general themes asking about the diagnosis, evaluation of organ involvement, management of the disease, and major hurdles in the effective care of patients.
Key features of the respondent physician population are summarized in [Table 1]. Of the 290 delegates who attended the symposium, 116 responded (40%) and a majority were rheumatologists. For diagnostic purpose, only 15 (13%) used nailfold capillaroscopy and only 52 (45%) used skin scoring routinely in their clinics. Majority (>80%) used X-ray chest, pulmonary function tests (PFT), and two-dimensional echocardiogram (2D Echo) routinely to check for organ involvement. Ninety-five percent respondents admitted that they are still dependent only on 2D Echo for the diagnosis of pulmonary artery hypertension (PAH). Eighty-six (74%) felt that cardiologists are not keen on doing right heart catheterization (RHC) and are the major hurdle in getting a RHC done.
Regarding the management of interstitial lung disease (ILD), 100 (86%) respondents were doing yearly PFT's to look for lung involvement, whereas 66 (57%) also did high-resolution computed tomography when ILD was clinically suspected. Sixty-three (55%) respondents preferred cyclophosphamide for the managing ILD. Sixty-four (55%) had used biological agents in managing difficult SSc patients with rituximab being the most common agent used for resistant ILD cases. Majority (43%) felt that lack of awareness leading to delayed presentation and variable affordability and access to care were the major hurdles in the effective management of SSc patients.
Overall, this survey highlights wide variability in the current SSc management practice in India. There are lacunae in the use of nailfold capillaroscopy and skin scoring in the initial assessment of patients, which needs to be improved. Lack of use of RHC for the diagnosis of PAH is one of the major concerns which has been noted before and in this survey too. SSc belongs to a group of rheumatological diseases where in many domains, India has contributed significantly. Nevertheless, the need for specific guidelines (for the management and measurement of its outcome) for SSc and other rheumatic disease in low-income countries such as India has been felt and this survey too underscores it., It is important to bear in mind the limitation of surveys like this, particularly the inherent selection bias of physicians who have a special interest in SSc that may not be representative. In conclusion, the overall message from this survey undoubtedly is that there is a large scope for improvement in managing this rare disease.
| References|| |
Dudam R, Dharmanand BG. International Scleroderma Symposium: July 16-17, 2016, Bengaluru. Indian J Rheumatol 2016;11 Suppl 2:S163-4.
Shenoy P. Measurement of outcome in systemic sclerosis – Indian perspective. Indian J Rheumatol 2013;8 Suppl 2:S60.
Misra DP, Agarwal V, Negi VS. Comment on: Emerging evidence based therapies for systemic sclerosis. Indian J Rheumatol 2016;11:238-9.
Westhovens R, Arat S. Evaluating systemic sclerosis patients, which measures to use? Indian J Rheumatol 2013;8 Suppl 2:S55-9.
Ravindran V. Rheumatology outcome measures in principle and practice in India: So near and yet so far. Indian J Rheumatol 2013;8 Suppl 2:S8-10.
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|[Pubmed] | [DOI]|