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CHALLENGES IN PREVENTING DISABILITIES AMONG CHILDREN AFFECTED BY LEPROSY - M Sethi FINDINGS FROM A REFERRAL HOSPITAL PSS Rao IN NORTH INDIA The Leprosy Mission Trust India * Presenting author tlmshahdara@tlmindia.org Symposium- Promoting


  1. CHALLENGES IN PREVENTING DISABILITIES AMONG CHILDREN AFFECTED BY LEPROSY - M Sethi ⃰ FINDINGS FROM A REFERRAL HOSPITAL PSS Rao IN NORTH INDIA The Leprosy Mission Trust India * Presenting author tlmshahdara@tlmindia.org Symposium- Promoting Early diagnosis 18 th September 2013

  2. Introduction • India had declared elimination of leprosy in December 2005 and leprosy services have been integrated into general health services • There is still high incidence of disabilities in children which poses a major challenge to the society and leprosy services • If the nerve function impairment (NFI) is < 6 months duration , further disabilities can be prevented by early intervention

  3. Background  The Leprosy Mission (TLM) Community Hospital established in 1984 is located in the north-eastern part of Delhi , India  Annually 300- 400 new leprosy cases are detected and 5,000 people affected by leprosy are treated  It has an in-patient ward of 45 beds

  4. Objectives • To estimate the burden of disabilities due to leprosy among untreated children brought to this referral hospital • To Identify measures to prevent them

  5. Material and Methods • All untreated children affected by leprosy (<15 years) brought to the OPD in TLM Hospital Nandnagri Delhi, India during Lab January 2009 to Dec 2012 investigation Clinical Clinical (CBC, Slit were included history examination Skin Smear , • HPE) Patients were classified into WHO deformity Grade 0 , 1 and 2 • All data was collected , analysed through SPSS software

  6. Findings

  7. Grade 0 8 Male 7 Female • 15 Grade 1 0 15 PB Grade 2 0 Findings → N=94 Grade 0 47 79 MB Grade 1 9 Grade 2 50 Male 29 Female 23 34% patients with disabilities (grade 1 & grade 2) and 24.5% with grade 2 disabilities

  8. Incidence of disabilities by age ( in years ) Percentage of deformity with age ( in yrs ) 100 100 90 80 65 70 56.5 60 Grade 0 50 Grade 1 40 30 29 Grade 2 30 14.5 20 5 10 0 0 0 < 5 6 to 10 11 to 15 Age in years Among the MB cases the disabilities increased with increasing age; there were no disabilities among children < 5 years of age

  9. Incidence of disabilities by RJ Classification 100 100 100 Percentage of patients with deformity 90 78 80 70 60 60 Grade 0 50 Grade 1 40 30 Grade 2 30 20 11 11 10 10 0 0 0 0 0 TT BT BL LL Ridley Jopling (RJ )Classification Majority of disability cases were reported among BTHD patients

  10. Incidence of disabilities by history of household contact 100 Percentage of patients with deformity 100 90 80 70 64 70 60 Grade 0 50 Grade 1 40 28 Grade 2 30 15 15 20 8 10 0 0 0 No known contact Household contact Other Contacts History of contact It was noted that there were less number of cases with disability in children who had familial or extra familial contact .

  11. Incidence of disabilities by reactions at the time of presentation Percentage of patients with deformity 73 80 70 60 48 50 Grade 0 40 Grade 1 26 26 24 30 Grade2 20 3 10 0 Reaction No Reactions Reaction at the time of presentation

  12. The incidence of disabilities by number of nerve lesions Nerve Grade 0 Grade 1 Grade 2 Total involvement 0 9 (100%) 0 0 9 1 10 (100%) 0 0 10 >1 43 (57%) 9 (12%) 23 (31%) 75 Total 62 9 23 94 • There were no disability cases in patients with no nerve trunk involvement • Among the disability cases 65% had NFI >12 months duration , 15% had 6-12 months and 20% < 6 months duration

  13. Incidence of disabilities with multiple nerve trunk involvement Percentage of patients with disability 76 80 70 55 60 43 50 40 Grade 0 34 40 Grade 1 30 Grade 2 16 15 20 9 9 10 0 2 to 3 4 to 5 >5 Number of Nerve lesions • Among all disability cases there was direct relationship with multiple nerve trunk involvement • It was noted that the disability cases had ipsilateral nerve trunk involvement

  14. Grade 2 disability in children Ulnar Clawing (70%) Plantar Ulcer (20%) Lagopthalmos (10%)

  15. Incidence of disabilities by number of skin lesions Percentage of patients with disability 80 73 67 70 60 50 50 Grade 0 40 33 Grade 1 29 30 Grade 2 21 19 20 8 10 0 0 0-5 6 to 10 >10 Number of Skin lesions There was no relation of Grade 2 disability with number of skin lesions

  16. Reasons for delay Percentage of pts Reasons for delay Total (%) with delay (%) Indigenous 23% medications PHC 10% Misdiagnosis 43% Private practioners 10% Ignorance 28% 28% Financial 20% 20% constraints Stigma 9% 9%

  17. Conclusion • These rates of disability in young children are worrying as they point to considerable delay in diagnosis of leprosy. • Lack of family/ household contact could mislead the parents / health practitioners in misdiagnosis leading to delay in seeking the right treatment • Lack of association of disabilities with number of skin lesions is significant as only skin patches are counted for classification in the field which can lead to misdiagnosing / wrong classification

  18. Recommendation for parents / guardians • Families need to be motivated for early reporting as children cannot be expected to go on their own to a health facility • It is important for them to know tell tale signs of leprosy, reaction and neuritis

  19. Recommendation for teachers • Educating teachers not only about early signs of leprosy but also early signs of neuritis, and prompt reporting in suspected cases

  20. Recommendations for health service providers and health professionals • Further studies need to be carried out to determine the reasons for delay in seeking correct treatment through detailed interviews and questionnaire • It would help in developing practical strategies to prevent the complications • Supplementing the voluntary reporting through special school surveys as dependence only on it alone at integrated centres is inadequate to detect early cases of leprosy, especially among children

  21. Any amount of medical care is futile when the children are not brought to the treatment centre early enough before irreversible damage occurs

  22. References • Joshi P. National scenario, National Leprosy Eradication Programme and new paradigms.IAL text book of leprosy. New Delhi: Jaypee Brothers Medical Publishers; p.35-43(2010) • Kar BR, Job CK. Visible deformity in childhood leprosy--a 10-year study. Int JLepr Other Mycobact Dis. 2005 Dec;73(4):243-8 • Rao R, Balachandran C. Multiple grade II deformities in a child: tragic effectof leprosy. J Trop Pediatr. 2010 Oct;56(5):363 • WHO.A guide to eliminate leprosy as a public health problem , 1 st edn.Geneva:WHO,1995,p.48 • Mahato ME. Disability prevention and medical rehabilitation (DPMR)--preventionof disability and timely referral in leprosy. J Indian Med Assoc. 2006Dec;104(12):682-5 • Mehndiratta RC, Patnaik A, John O, Rao PS. Does nerve examination improvediagnostic efficacy of the WHO classification of leprosy? Indian J DermatolVenereol Leprol. 2008 Jul-Aug;74(4):327-30 • Pandey A, Rathod H. Integration of leprosy into GHS in India: a follow upstudy (2006-2007). Lepr Rev. 2010 Dec;81(4):306-17 • Daniel S, Arunthathi S, Rao PS. Impact of integration on the profile of newly diagnosed leprosy patients attending a referral hospital in South India. Indian J Lepr. 2009 Apr-Jun; 81(2):69-74 • Singal A, Sonthalia S, Pandhi D. Childhood leprosy in a tertiary-care hospital in Delhi, India: a reappraisal in the post-elimination era. Lepr Rev. 2011Sep;82(3):259-69

  23. Acknowledgements • The leprosy Mission Trust India , Staff and all concerned patients

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