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Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Jan 13, 2016

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Austin Harper
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Page 1: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
Page 2: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Will Bilkis see again?

Page 3: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Bilkis revisited

Page 4: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Her suffering could have been avoided

Page 5: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Childhood BlindnessRarer than blindness in adultsTotal number of blind-years suffered by blind

children is second only to that due to cataract in adults

Reliable data is not available from all geographic regions

Page 6: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Childhood BlindnessPossible sources of dataAvailable data on childhood blindness in

India - prevalence & causesChange in the trend over time

Page 7: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Prevalence - Sources of dataBlindness RegistrationBirth cohort studiesSurveillancePopulation based surveyCommunity Based Rehabilitation (CBR)

programme

Page 8: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
Page 9: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Community Based RehabilitationPrevention and treatment of preventable and

treatable visual impairmentRehabilitation of incurably blind individuals

Page 10: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

CBRBaseline door-to-door surveys of whole

populationVisual screening by qualified

ophthalmologists and optometristsIncludes all age groups

Page 11: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Estimation of Prevalence of blindness using U5MRs

U5MR/1000

Estimatedprevalence

Example countries

0-19 0.3 UK, Sweden

20-39 0.4 Argentina, Thiland

40-59 0.5 Honduras, Vietnam

60-79 0.6 South Africa, Brazil

80-99 0.7 Zimbabwe, Papua New Guinea

100-119 0.8 Kenya, Nepal

120-139 0.9 Sudan, Laos

140-159 1.0 Tanzania, Albania

160-179 1.3 Nigeria, Central AfricanRepublic

180+ 1.5 Niger, Bhutan

Page 12: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Prevalence of Childhood Blindness in India0.61/1000 children(95% CI0.51-0.82) in

Andhra Pradesh (CBR)0.51/1000 children(95% CI 0.37-0.65) in West

Bengal (CBR)1/1000 children(95% CI 0.094 - 0.106) in

Orissa (Survey)1/1000 children (East Delhi)1.06/1000 children (Karnataka)

Page 13: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Prevalence of Childhood Blindness in some countries

Country Categoryof visualimpairment

Prevalence/1000

Agegroup inyears

Source ofdata

Year

Scandinavia

<3/60 0.15 –0.41 0-15 Registration

1992

Iceland variable 0.36 0-14 Survey 1980

UK <6/60 0.34 10 Cohortstudy

1988

India <3/60 0.51 -0.65 0-15 CBR 1998

Nepal <3/60 0.63 0-16 Survey 1980

Nigeria <3/60 1.00 5-14 Survey 1994

Page 14: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Distribution of Severely Visually Impaired and Blind Children in the World

Region Population(0-15yrs.) inmillion

Estimate ofprevalenceper 1000

Estimated no.of SVI/Blindchildren

Africa 240 1.1 264000

Latin America 130 0.6 78000

NorthAmerica,Europe,Japan,Oceania,former USSR

240 0.3 72000

Asia 1200 (350 inIndia)

0.9 (0.8 inIndia)

1080000(270 000 inIndia)

Total 1810 1494000

Page 15: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Incidence of Childhood BlindnessInsufficient informationIn industrialized countries 2/100,000

children/year due to acquired diseasesGlobally 500,000 children become blind every

year50 - 60% blind children die early in their

childhood

Page 16: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Classification of Causes of Blindness in ChildrenAnatomical

Classification - Takes into account the part of the eye most affected

Aetiological Classification - Takes into account the time of onset of the condition leading to blindness

Page 17: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Causes of Childhood Blindness - Sources of Data used in India

Blind School StudiesCBRPopulation based Survey

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Page 19: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Causes of SVI & Blindness in children from all the reported studies in India

Causes CBRN %

Blind SchoolsN %

TotalN %

WholeGlobe

36 29 530 25 566 25

CornealOpacity

14 11 607 28 621 27

Lens 17 14 239 11 256 11

Uvea 11 9 107 118 5

Retina 23 18 467 21 490 22

Optic Nv. 16 13 122 6 138 6

Glaucoma 3 2 64 3 67 3

Others 5 4 22 1 27 1

Total 125 100 158 100 2283 100

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Some recent findings from different parts of IndiaCongenital whole globe abnormality is as

high as 41% in MaharastraVAD is still a major cause of blindness in

North EastUncorrected Refractive error is major cause

of blindness among children in West Bengal in Sarva Siksha Abhiyan ( universal education drive), - unpublished . Results from surveys in Gujarat and west Bengal in 2005 also shows similar results.

Page 21: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
Page 22: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
Page 23: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
Page 24: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Aetiological CategoriesAetiologicalCategory

CBRN %

Blind SchoolsN %

TotalN %

Hereditaryfactors

13 24 552 26 565 26

Intra-uterinefactors

4 8 35 15 39 2

Perinatalevents

2 4 35 15 37 2

Childhoodfactors

8 5 622 29 630 28

Unknowncauses

26 49 914 42 940 42

Total 53 100 2158 100 2211 100

Page 25: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Commonest Causes of Blindness in Children in IndiaCorneal scarring mainly due to VADCongenital anomalies of the whole globe,

usually of unknown cause, but where genetic factors may play a role

Retinal dystrophies mainly hereditaryCataract and amblyopia

Page 26: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Regional Variation in the major causes of blindness in schools for the blind in India

State VAD Retinal dystrophies/ Albinism

Cataract/Aphakia/Amblyopia

Congenital anomalies

No. of Children % % % % Gujarat(97) 21.6 9.2 11.3 17.3 MP(101) 26.7 11.9 3.9 18.8 Haryana(141) 15.6 25.5 5.7 20.6 UP(134) 21.6 6.7 2.9 32.8 WB(89) 24.7 11.2 16.8 19.1 Maharastra(157) 20.4 13.8 12.7 17.2 Karnataka(122) 11.5 23.7 6.5 28.7 Kerala(93) 7.5 33.2 23.6 6.5 TN(384) 18.5 25.5 9.8 20.6

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Avoidable Childhood Blindness in IndiaUp to 30% Preventable20% causes treatable

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Corneal Blindness among students of Blind Schools in West Bengal

0

5

10

15

20

25

30

35

40

16-19 yrs. 11-15 yrs. 0-10 yrs.

Whole GlobeCornea

Page 29: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Change of trend in the causes of childhood blindness in IndiaCorneal blindness is decreasingCongenital whole globe abnormalities are

becoming proportionately higherROP is likely increase in urban areasUncorrected refractive errors could be a

major cause if detected properly

Page 30: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

How to reach children- IssuesNeed vs. availability of serviceNeed vs. uptake of serviceAvailability of service vs. affordability

Page 31: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Ways to reach childrenSchool health programmeThrough health workers working in MCHICDS – helps early detectionCBROutreach campsKey informantsPublic education in various formsNetworking with physiciansUtilising Immunisation daysSensitising all levels of workers even

priests

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Motivating ICDS workers

Page 33: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Training ICDS Workers

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Childhood blindness survey

Page 35: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
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Why Early Rehabilitation?When a mother brings a visually impaired

child to a doctor she doesn’t know whether the disease is curable or incurable. She needs help.

All our efforts to restore vision may fail, but we should not fail to give proper guidance to parents about the child’s overall development.

Outcome is always better if the process is started early

Page 37: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Low vision devices have greater role to playExhaust maximum medical management and

continue follow-upFind out suitable LVD (optical and non

optical) at the earliest opportunityGive overall training

Page 38: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Low Vision Assessment in camps

Page 39: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Practical approachAwareness generationActive Case finding utilising all sourcesEarly interventionIndividualised approachMaking devices affordable

Page 40: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Computer Braille training centre (2002), VMA School for the Blind

Page 41: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Integrated Education for a Blind child

Page 42: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.
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Sakera at Victory Stand

Page 44: Will Bilkis see again? Bilkis revisited Her suffering could have been avoided.

Thank you