Request of information about a tool designed to measure and monitor ulcers

Ref.:   Request of information about a tool designed to measure and monitor ulcers.

From: D Andersen, Chennai, India

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Dear Dr Salvatore,

Thank you for adding me to the mailing list.  I am a student at Brigham Young University in the U.S. and I am conducting an internship with a leprosy rehabilitation organization called Rising Star Outreach; they operate outside of Chennai in India.

I am currently seeking a tool designed to measure and monitor ulcers.  I am evaluating an organizations health services which includes a mobile medical clinic that visits leprosy colonies bi-weekly to provide any treatments, as well as training and supplies for self-care.  So, the tool needs to be sensitive enough to measure the impact their programs have on the treatment of ulcers.  Any direction for finding such a resource would be greatly appreciated.

Thanks,

Dane Andersen
Project Evaluation and Assessment Team
Brigham Young University

Times of India News

Ref.:   Ref: Times of India News [Date: 7.6.2012] 
From: U Thakar, Mumbai, India

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Dear Dr Noto,

Please, upload this important news (see attachment) on the leprosy mailing list.  Times of India News [Date: 7.6.2012].  It is about the new division specifically for the disabled at the Ministry of Health in India.

Thanks and regards,

Uday Thakar

Mr. Uday Thakar

Hon. Secretary,

Hind Kusht Nivaran Sangh-Maharashtra Branch

C/o Acworth Leprosy Hospital Research Society

Wadala, Mumbai-400031

India

Email : hknsnational@yahoo.co.in

           acworthleprosyrre@yahoo.co.in

BIKASH Enablement Newsletter

Ref.:   BIKASH Enablement Newsletter
From: G Gurung, Pokhara, Nepal

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Dear Dr. Salvatore Noto,

Greetings from Nepal!  Kindly, circulate the first BIKASH Enablement Newsletter through your very popular leprosy mailing list.

Many thanks.

With our best wishes,

Gopal Gurung

Program Manager

BIKASH Nepal

Pokhara

Nepal

P: 00977 61 430562

F: 00977 61 430940

W: www.bikashnepal.org.np

Summer School on Disability & Development. Depok, West Java, Indonesia from 18 June to 13 July 2012

Leprosy Mailing List – April 2^nd, 2012 

Ref.:    Summer School on Disability & Development.  Depok, West Java, Indonesia from 18 June to 13 July 2012
From:  W. H. van Brakel, Amsterdam, The Netherlands

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Dear Salvatore,

Could you kindly circulate the following message on your list.

Summer School on Disability & Development

Join us this summer in Indonesia for the 3^rd Summer School on Disability & Development!  This international, English-medium course is offered by the University of Indonesia and the Athena Institute, VU University Amsterdam to be held in Depok, West Java, from 18 June – 13 July 2012.  Fees for disabled participants are negotiable.  The course is aimed at a Master-level of study, but the problem-based learning approach used and the large quantity of scientific papers and other documents provided allows participants to study in as much depth as they desire.  A good level of fluency in both spoken and written English is required.  Detailed information is available in the attached documents (Word, PDF).  The course is about disability in general, but leprosy is often used as a model of disablement.

With kind regards,

Wim van Brakel

Course Coordinator

Wim H. van Brakel, MD MSc PhD

Coordinator Disability & Development

Athena Institute

Faculty of Earth & Life Sciences

VU University Amsterdam

Tel. +3120 598 2529

Mobile +316 3035 9935

Email w.van.brakel(at)vu.nl

Silent neuritis (Quiet Nerve Paralysis)

Leprosy Mailing List – March 9th, 2012 

Ref.:    Silent neuritis (Quiet Nerve Paralysis)From: H Srinivasan, Chennai, India

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Dear Dr Salvatore Noto,

Ref.: Query by Dr Narayanakumar (Kumbakonam, India) about “Silent neuritis”

Thank you, Dr Narayanakumar. My response is as follows :-

The term “Silent neuritis” is used by many to refer to the occurrence of nerve function deficit (NFD), usually motor paralysis, without concurrent or immediately antecedent episode of acute neuritis.  I preferred the term “Quiet Nerve Paralysis” (QNP) to refer to this phenomenon.

While leprologists were aware of its occurrence, I drew attention to the fact that it was associated with the occurrence of deformity in a significant proportion of patients [1].  Here I will not go into the reasons why I preferred the term ‘Quiet Nerve Paralysis’ to ‘Silent Neuritis’.  Interested colleagues may refer to reference [2].  

During the course of my investigations, in the field and in the sanatorium, on the origin and progress of deformities in leprosy patients, I found that motor paralysis and associated deformity was five times more common in patients giving a history of remembered attack(s) of acute neuritis of the concerned nerve trunk than in those not giving such a history.  However, I also found that such patients accounted for only about 20% to 25% of those showing paralytic deformity.  Even allowing for faulty memory, it appeared that a sizable proportion of patients developed deformity without developing acute neuritis.  We designated such patients as having ‘Quiet Nerve Paralysis’.

This group of patients comprised:
1). untreated or inadequately treated patients;
2).Patients adequately treated in the past and discharged as ‘cured’; as well as
3).patients still under treatment.
We hypothesized that uncontrolled leprosy was the cause of nerve paralysis in the first group and instituted proper anti-leprosy therapy in them.  We considered QNP as the manifestation of relapse of leprosy in the second group and treated them again with anti-leprosy treatment of the day.  As for the third group, we felt that, in the absence of other explanations, they probably had “subclinically operating reactional pathology” in them and so treated them with a standard course of prednisolone for three to four months or more depending on their response.  Varying proportion of patients showed partial or complete restoration of nerve function in all the three groups, indicating that our conjectures were probably correct, at least in those patients.  Those in the first two groups who did not show any sign of recovery of nerve function after three months of anti-leprosy therapy were given a standard course of steroid therapy for what it was worth.  If I remember right, there was no clinical evidence suggestive nerve compression in these patients and so nerve decompression was not offered to them.

We subsequently tried to carry out a prospective trial of steroid therapy for QNP in the field, but the results were not reliable due to operational problems.

I should also point out that the patients were from South India, and the study was done during the ‘dapsone era’ when dapsone monotherapy was the standard anti-leprosy treatment.  I do not know what the situation is like in present conditions of years of intensive coverage of the patient population with MDT and fewer cases of active leprosy in the environment.

H Srinivasan FRCS
Surgeon (Retd.)
25, First Seaward Road
Chennai - 600 041
India

[1] Srinivasan H, Rao KS, Shanmugam N (1982).  Steroid therapy in recent “quiet nerve paralysis” in leprosy. Leprosy in India  54(3) :  412 – 419.
[2] Srinivasan H, Gupte MD.  Experiences from studies on Quiet Nerve Paralysis, Ch. 3  in The Peripheral Nerve in Leprosy and Other Neuropathies, (pp 30 – 35), Ed. by Noshir H Antia & Vanaja P Shetty, Delhi, Oxford University Press, 1997.   

The Grading or Index is NOT a Neurological examination/voluntary muscle test/sensory testing

Leprosy Mailing List – March 8^th, 2012 

Ref.:    The Grading or Index is NOT a Neurological examination/voluntary muscle test/sensory testing

From:  L F Lehman, Belo Horizonte, M G, Brazil.

---

Dear Cairns,

Thank you for your message [LML March 6^th, 2012].  Yes, indeed the history of all is interesting. 

Dr. Palande can also give an important account of this early development as he was actually the originator, I believe of the idea, which than was adopted and adapted by W.H.O.  I do know talking with several of the persons involved in the beginning, the whole thing created quite a bit of discussion!

One other big areas of confusion is that many feel when they have done the Grading/Index they have done a "Neurological Examination – Voluntary muscle testing (VMT)".  It is important that readers clearly understand the Grading or Index is NOT a Neurological examination/VMT.  

Dr. Srinivasan [and Drs Schreuder and Naafs as well] points out that we need to combine Nerve palpation (pain responses) Sensory and Motor exams.  I am concerned that many programs have nerve palpation in one area of their clinical exam and then off in the physiotherapist part, the motor and sensory.  The Neurological exam is part of the Clinical exam and should combine all 3 parts.  Clinicians should know how to do and interpret results.  The neurological exam as well as education to help patients identify neurological changes is important.  Doing the Grading/Index each month may not be needed.  It is a concern that more time sometimes is spent on exams with little time spent working on self-care practice and education.  What is even more of a concern is that sometimes no action is taken when the exam results shows things have gotten worse.  The health team at times do not look at and/or do not know how to interpret the results.  Practice in interpretation and choosing what should be done is an important part of training/supervision.  Case studies can be helpful.

The other issue is that I see many programs record grading/indexes based on ONLY hand and foot exams and the eye is not even examined and/or perhaps the patient is asked "Do you see OK".  When I check the distance that fingers are counted, it varies greatly as people mark off the distance with their leg length of what they think is 6 meters.  It usually is less by at least a meter or 2.  

The quality of the Grading/Index has to be constantly monitored and clarified to try and get consistency.  Although it seems simple, I have seen it interpreted and additions slipped in without others knowing until close observation and inquiry is done.  I recall much effort was put into trying to get better definitions, clarity and consistency from 1997-2003 in Brazil.  National guidelines tried to include clearer definitions.   We worked hard at it and much improved however today this needs to be checked again.  I know this is something that all countries must monitor carefully.

Linda

Disability indices

Leprosy Mailing List – March 6^th, 2012 

Ref.:    Disability indices

From:  C Smith, Aberdeen, Scotland, UK

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Dear Emanuel,

Thank you for giving details of the Bechelli Index used in FIOCRUZ [LML Feb. 25^th, 2012].  I know it well but I had called it the Disability Index.  I used it extensively in the 1970s and 1980s in my doctoral thesis using the Disability Index 2 as the outcome in leprosy control – see the attached papers.

There were 3 indices proposed in the 1971 paper by Bechelli and Dominguez.  I wondered when the grading changed from a scale of 0,1,2, and 3 to a scale of 0,1 and 2.  The answer is in the WHO Expert Committee on Leprosy Report 768 published in 1988 and the change is described in the WHO Guide to Leprosy Control, 2^nd Edition in 1988.  The reason given for the change was that the grading system was considered to be ‘rather beyond the comprehension of primary health workers’.  1988 was the period when the uptake of MDT to replace dapsone mono-therapy was being advocated, and primary care was becoming involved in the delivery of leprosy services. 

The index you are using is the new 0,1 and 2 scale recommended by the Expert Committee in 1988 to calculate the Disability Index 2 (Bechelli Index 2) by adding all the scores for each eye, hand and foot and dividing by 6 to give an average.  The EHF score is actually the Bechelli Index 1 where the maximum score for each eye, hand and foot is added to produce the total score rather than the average score.         

The questions raised by Linda Lehman [LML March 1st, 2012] are very relevant about which index to use and when?  The Bechelli Index 2 which you use and the EHF score (Bechelli Index 1) are useful in monitoring progress in individual patients whereas the Grade 2 maximum score is more limited to monitoring early case detection in programmes with less expertise.

The important point is that we need to be clear which assessment we are using for which purpose, and that we all use them in the same way to be consistent and to provide comparable information.

Many thanks,

Cairns

"Disability Grading" is helpful to look at things form a GENERAL PUBLIC HEALTH perspective …

Leprosy Mailing List – March 1st, 2012 

Ref.:    "Disability Grading" is helpful to look at things form a GENERAL PUBLIC HEALTH perspective …

From:  L Lehman, Brazil

---

Dear Salvatore,

Thank you for the posting of the results from the Disability Survey from Prof Cairns Smith - well done.

It highlights the areas of confusion and inconsistencies.  It shows us how to focus training and where we must monitor as new people come into health services.  I must personally say that the publication from Brandsma in 2003 of his "Proposed Grading" created confusion in several countries and health services I visited.  They thought it was an "Official W.H.O. Grading " that was supposed to be changed.  Brandsma's Proposal in Leprosy Review in 2003 is not acceptable by all but, could lead to further discussions as pointed out in this survey.

It might be worthwhile to discuss the PURPOSE of the Grading.  Many try to use it beyond its capabilities and Ebenso and Ebenso addressed this in their article in Leprosy Review a few years ago.  I do not believe it can substitute for doing a good clinical examination and documentation of the impairments found on the face, eyes, hands, feet and body.  It too does not look at the WHOLE person and the effects of the disease on their ability to do activities or participate socially - that is one of the reasons the SALSA and P-scale were developed and later an instrument to measure stigma.  

This "Disability Grading" is helpful to look at things from a GENERAL PUBLIC HEALTH perspective (providing it is done correctly and all are using the SAME criteria).  It can give us an idea of the following:

1. Early Diagnosis and if Health education is helping people identify and seek treatment early;

2. QUALITY of Treatment/Care.  Determine if New cases have been MANAGED adequately.  (In addition to multi-drug therapy (MDT), Completion of a cohort analysis comparing the Grades at Beginning and end of MDT Treatment gives one a better idea of quality of care).

I found when at the end of treatment the Grade was worse it usually was related to:

a. people not managing reactions well;

b. not doing adequate self-care education which included Grade 0 with reactions, Grade 1 & 2;

c. not having or using adequate protective footwear for those feet at RISK.  

The COHORT analysis of the grades at beginning and end of treatment may be one of the best QUALITY Indicators we could use on a more global level.  We do it for multibacillary and paucibacillary MDT completion rates, why can this not be considered?   I found when I did it with individual health services, it opened their eyes to areas in their management and care that needed attention.  

Another issue needing further discussion is the labeling of persons as "Disabled" based on the Grading.  This could be addressed at another time. 

Thank you again for this excellent work!

Linda Lehman

Disability index for leprosy patients. The Bechelli’s index

Leprosy Mailing List – February 25^th, 2012

Ref.:    Disability index for leprosy patients. The Bechelli’s index

From:  E. Rangel, Rio de Janeiro, Brazil

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Dear Salvatore,

Thank you very much to Prof Smith for sharing on the leprosy mailing list the results of the Disability Grading Survey.  In our service, here at FIOCRUZ, I use the BECHELLI’s index.  Kindly find in attachment the references (Word document - PDF document)

Best regards,

Emanuel Rangel
Physiotherapist

Disability Grading Survey Results

Leprosy Mailing List – February 25^th, 2012 

Ref.:    Disability Grading Survey Results

From:  C Smith, Aberdeen, Scotland, UK

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Dear Salvatore,

I would be grateful if you could post the results of the Disability Grading Survey on the LML.  I have attached versions in English and Portuguese kindly translated by Duane Hinders. 

Cairns

Cairns Smith

School of Medicine and Dentistry,

University of Aberdeen,

Polwarth Building,

Foresterhill,

Aberdeen AB25 2ZD,

Scotland, UK

Telephone - (44) 1224 437266

Email: w.c.s.smith@abdn.ac.uk 

Disability Grading Survey – available in English, French and Portuguese - deadline extended to 17th February

Leprosy Mailing List – February 9^th, 2012 

Ref.:    Disability Grading Survey – available in English, French and Portuguese - deadline extended to 17^th February

From:  C Smith, Aberdeen, Scotland, UK

---

Salvatore,

We have had an excellent response to the Survey on disability grading – so far 237 people have completed it.  I would like to extend the deadline to 17^th February for anyone who has still to complete the survey – it is available in English, French and Portuguese.

http://www.abdn.ac.uk/~sme577/Leprosy  (English)

http://www.abdn.ac.uk/~sme577/Leprosy%20French/

http://www.abdn.ac.uk/~sme577/Leprosy%20Portuguese/

I have asked a panel of experts to give their answers and I will circulate this with the survey finding on 24^th February.

Many thanks,

Cairns Smith.

School of Medicine and Dentistry,

University of Aberdeen,

Polwarth Building,

Foresterhill,

Aberdeen AB25 2ZD,

Scotland, UK

Telephone - (44) 1224 437266

Email: w.c.s.smith(at)abdn.ac.uk

Further information

Accurate assessment of disability due to leprosy using the WHO Disability Grading is important.  It is used to monitor diagnosis (it indicates whether diagnosis is early or late) and it is used as an indicator of the effectiveness of treatment (the progress of patients during MDT is monitored using the WHO disability grading).   

The WHO disability grade is a simple method to assess impairments in the Hands, Eyes and Feet of patients taking MDT.  It is described in the Operational Guidelines for the Enhanced Global Strategy (2011-2015) – see page 22 – 25.  The overall WHO Disability Grade (the WHO maximum Disability Grade) should be recorded for each patient, but it is also recommended that a patient’s progress through treatment should be assessed using the EHF score. The EHF score is when the grading for both eyes, both hands and both feet are added together.  

It is important that the WHO Disability Grades are accurate and reliable.  There is wide variation in the disability grading between and within countries.  This may be due to real differences or due to differences in the way the Grading is implemented.   We would like to check to see if disability assessments are conducted and recorded in the same way everywhere. To help assess this situation, we would like as many people as possible to complete the following 20 questions (your answers will be completely anonymous).  We will circulate the answers on the LML

Original English:  http://www.abdn.ac.uk/~sme577/Leprosy 

Disability Grading in Colombia

Leprosy Mailing List – January 31^st, 2012 

Ref.:    Disability Grading in Colombia

From:  N Cardona Castro, Sabaneta, Colombia

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Dear Dr. Salvatore,

Thank you for posting Prof. Smith’s survey on W.H.O. disability grading on the leprosy mailing list. (Jan. 13^th and 28^th, 2012).  I would like sharing the disability classification used in Colombia.

We do not use the eye, hand and feet (EHF) score, and the grades are 0, I and II but, there are other characteristics that can be interpreted like there are patients grade II+ or III.  Herewith I copy the parameters for disability classification used in Colombia.  They are included in the guidelines of our Leprosy Control Programme which is available on line at the following internet address: -http://www.nacer.udea.edu.co/pdf/libros/guiamps/guias18.pdf.  They are in Spanish and their English translation follows between brackets.

14.3 Evaluación de la discapacidad (evaluation of disabilities)

Para dicha valoración se asume la clasificación de la OMS (This evaluation uses the W.H.O. guides)

Ojos:  (Eyes)

• Grado 0: sin discapacidad (Grade 0: no disabilities)

• Grado I: anestesia, conjuntivitis (Grade I: anaesthesia, conjuntivitis)

• Grado II: lagoftalmos (Grade II: lagophthalmos)

• Iritis o queratitis: opacidad de córnea (iritis, keratitis: corneal opacity)

• Catarata: pérdida avanzada de la visión (cataract, loss of vision)

• Ceguera (blindness)

Manos: (Hands)

• Grado 0: sin discapacidad (Grade 0: no disabilities)

• Grado I: anestesia (Grade I: anaesthesia)

• Grado II: úlceras y heridas (Grade II: ulcers and wounds)

• Dedos en garra móviles: (mobile claw fingers)
• Reabsorción de 1 ó más falanges: (Reabsorption of 1 or more phalanges)
• Parálisis radial anquilosis: (Paralysis radial ankylosis)

 Pies: (Feet)

• Grado 0: sin discapacidad (Grade 0: no disabilities)

• Grado I: anestesia (Grade I: anaesthesia)

• Grado II: perforante plantar: (Grade II: plantar ulcer)
• Dedos en martillo: pie paralítico (Hammer toes: paralytic foot)
• Reabsorciones: (resorptions)
• Anquilosis de la articulación del cuello del pie (Ankylosis of the ankle joint)

Best wishes,

Nora Cardona Castro

MD MSc Investigadora Prof Asociada

Instituto Colombiano de Medicina Tropical - Universidad CES

Carrera 43A # 52 Sur 99  Sabaneta, Colombia

Tel: (57) (4) 3053500 ext 2297 | Fax: (57) (4) 3014258

ncardona(at)ces.edu.co | www.ces.edu.co

Disability Grading Survey – available in French and Portuguese

Leprosy Mailing List – January 28^th, 2012

Ref.:    Disability Grading Survey – available in French and Portuguese

From:  C Smith, Aberdeen, Scotland, UK

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Dear Salvatore,

We have now translated the disability survey into French and Portuguese.  Could you post it on the LML please?

http://www.abdn.ac.uk/~sme577/Leprosy%20French/

http://www.abdn.ac.uk/~sme577/Leprosy%20Portuguese/

Cairns Smith

School of Medicine and Dentistry,

University of Aberdeen,

Polwarth Building,

Foresterhill,

Aberdeen AB25 2ZD,

Scotland, UK

Telephone - (44) 1224 437266

Email: w.c.s.smith@abdn.ac.uk

Further information

Accurate assessment of disability due to leprosy using the WHO Disability Grading is important.  It is used to monitor diagnosis (it indicates whether diagnosis is early or late) and it is used as an indicator of the effectiveness of treatment (the progress of patients during MDT is monitored using the WHO disability grading).   

The WHO disability grade is a simple method to assess impairments in the Hands, Eyes and Feet of patients taking MDT.  It is described in the Operational Guidelines for the Enhanced Global Strategy (2011-2015) – see page 22 – 25.  The overall WHO Disability Grade (the WHO maximum Disability Grade) should be recorded for each patient, but it is also recommended that a patient’s progress through treatment should be assessed using the EHF score. The EHF score is when the grading for both eyes, both hands and both feet are added together. 

It is important that the WHO Disability Grades are accurate and reliable.  There is wide variation in the disability grading between and within countries.  This may be due to real differences or due to differences in the way the Grading is implemented.   We would like to check to see if disability assessments are conducted and recorded in the same way everywhere. To help assess this situation, we would like as many people as possible to complete the following 20 questions (your answers will be completely anonymous).  We will circulate the answers on the LML

Original English:  http://www.abdn.ac.uk/~sme577/Leprosy

Disability Grading Survey

Leprosy Mailing List – January 13^th, 2012

Ref.:    Disability Grading Survey

From:  C Smith, Aberdeen, Scotland, UK

---

Dear Salvatore,

Could you please post this survey on WHO disability grading on the LML and ask as many people as possible to complete the survey.  It is simple and will only take 5 minutes to complete.  Once it has been completed click the SUBMIT button at the bottom and an acknowledgement will be sent. 

Can everyone please complete the survey in the next couple of weeks and we will circulate the responses and answers on the LML.

http://www.abdn.ac.uk/~sme577/Leprosy

Cairns Smith

School of Medicine and Dentistry,

University of Aberdeen,

Polwarth Building,

Foresterhill,

Aberdeen AB25 2ZD,

Scotland, UK

Telephone - (44) 1224 437266

Email: w.c.s.smith(at)abdn.ac.uk

Further information

Accurate assessment of disability due to leprosy using the WHO Disability Grading is important.  It is used to monitor diagnosis (it indicates whether diagnosis is early or late) and it is used as an indicator of the effectiveness of treatment (the progress of patients during MDT is monitored using the WHO disability grading).   

The WHO disability grade is a simple method to assess impairments in the Hands, Eyes and Feet of patients taking MDT.  It is described in the Operational Guidelines for the Enhanced Global Strategy (2011-2015) – see page 22 – 25.  The overall WHO Disability Grade (the WHO maximum Disability Grade) should be recorded for each patient, but it is also recommended that a patient’s progress through treatment should be assessed using the EHF score. The EHF score is when the grading for both eyes, both hands and both feet are added together. 

It is important that the WHO Disability Grades are accurate and reliable.  There is wide variation in the disability grading between and within countries.  This may be due to real differences or due to differences in the way the Grading is implemented.   We would like to check to see if disability assessments are conducted and recorded in the same way everywhere. To help assess this situation, we would like as many people as possible to complete the following 20 questions (your answers will be completely anonymous).  We will circulate the answers on the LML

International training announcement

Leprosy Mailing List – December 26^th, 2011

Ref.:    International training announcement
From: G Gurung, Pokhara, Nepal

---

Dear Dr Salvatore,

Greetings from Nepal!  This is just a quick check if our international training announcements have been forwarded to all LML readers.  I am attaching those files for your convenience.

Many thanks for your support,

Wishing you and all LML readers a Merry Christmas and Happy New Year 2012!

Gopal

Gopal Gurung

Program Manager

BIKASH Nepal

Pokhara

Nepal

P: 00977 61 430562

F: 00977 61 430940

W: www.bikashnepal.org.np

Training courses

1: Rehabilitation and Prevention of Disability (RPOD): 20 February-02 March 2012

2: Community Based Rehabilitation (CBR): 05-16 March 2012

3: Communication, Advocacy and Training Skills (CATS): 25-30 March 2012

4: Leprosy Training for Medical Doctors: 15-20 April 2012

Maharogi Sewa Samiti (MSS), Leprosy Rehabilitation Foundation, India

Leprosy Mailing List – December 5^th, 2011

Ref.:   Maharogi Sewa Samiti (MSS), Leprosy Rehabilitation Foundation, India.

From: S. Amte, Warora, Maharashtra, India

---

Dear Dr. Noto,

Maharogi Sewa Samiti is a non-profit organisation in Maharashtra State of India.  MSS was founded by my grandfather, world renowned leprosy activist, humanitarian and peacemaker late ‘BABA AMTE, way back in 1949 for helping leprosy afflicted people to enhance their livelihood capabilities through self-discovery and empowering them to contribute back to the society.  My grandfather Baba was the only person to receive UN Human Rights Award for the cause of leprosy.  He has also received several prestigious honors, like The Damian Dutton Award, Ramon Magsaysay Award and the Templeton Prize.

MSS has a firm belief in giving a 'Chance' and not just charity to the socially outcasts who have lost sense of self-respect.  It gives them opportunities to self-discover the worth of their hidden ability and thus eliminate their dependence on others.

MSS has been a pioneer in medical treatment and rehabilitation of leprosy patients in India.  We are proud to inform you that in June 2011, our organization has crossed a mark of benefitting 2.3 million marginalized people like the leprosy afflicted, people with disabilities and tribal populace through our constructive programmes.

Due to the qualitative enhancement in the lives of leprosy afflicted people with disabilities, MSS has been increasingly getting recognized internationally as an apex referral centre for leprosy rehabilitation.  This is evident with the fact that MSS received over one new leprosy patient each day at Anandwan, the headquarters, from various parts of the country and sometimes, the world.

Anandwan is perhaps the only experiment in the country where leprosy patients help others help themselves.  Leprosy patients produce various goods worth Rs. 40 million every year through various productive activities.  With the help of our cured leprosy patients, MSS now arranges various medical and surgical camps which benefit over 60,000 poor people from surrounding poverty stricken areas every year.  Anandwan dairy project has been able to generate 700 litres of milk every day.  Because of the relentless efforts of our people afflicted by leprosy, is been looked at as one of the most promising social businesses in the district.  It is a matter of pride that the non-exploitative, non-bureaucratic management system of MSS is being studied by various apex educational institutes that include civil services, IIMs, IITs, social science institutes, environmental science and agricultural institutes from all over the world.

We would like to be a part of LML and receive information about more such organisations in the world and explore the possibility of constructive association.  We would also like to explore the possibility of partnering with ILEP for livelihood promotion programmes with leprosy patients.  We cordially invite you to visit ANANDWAN sometime, our “Paradise of, for & by the Underprivileged” to see our inmates celebrate the birth of new life with great enthusiasm.
  
With warm regards,

Dr. Sheetal Amte

Development Officer
Maharogi Sewa Samiti

Warora

Maharashtra, India

Indian Council of Medical Research (ICMR) calls for proposals to evaluate Leprosy Eradication Programme

Leprosy Mailing List – November 8th, 2011 

Ref.:   Indian Council of Medical Research (ICMR) calls for proposals to evaluate Leprosy Eradication Programme

From: S. R. Narahari, Kasaragod, Kerala, India

---

Dear Dr Noto,

Can you please circulate the enclosed “ICMR Proposal”?  I think many leprosy mailing list readers might be interested.

ICMR calls for proposals to evaluate Leprosy Eradication Programme

The Indian Council of Medical Research (ICMR) has called for research proposals to evaluate the National Leprosy Eradication Programme (NLEP).  The deadline for scientists and doctors to submit proposals is December 15. 

India achieved leprosy elimination as a public health problem in December 2005, however there are pockets of endemicity where the number of new case detection is still high and the community is at higher risk of being infected with M. leprae.  Over 200 districts of India, in parts of Bihar, Madhya Pradesh, Maharashtra and Tamil Nadu recorded more numbers last year.

Therefore, to address these issues, Secretary, DHR and DG, ICMR has taken steps to promote research by funding projects on the Priority Areas of research in leprosy given below:-

Health Systems Research & Operational Research on integration issues.
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Studies evaluating current IEC strategies in increasing community awareness.

Studies addressing psychosocial issues for formulation of newer approaches to reduce the stigma, for encouraging early detection and completion of MDT.

Studies for encouraging early detection (through self-reporting) and completion of MDT.

Development of indicators for stigma at community level and evaluation of participation scale for wider use.
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Nerve Damage and Care of the Disabled at the Community level and impact of field interventions.

Epidemiological studies
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Estimating trends/prevalence/incidence in India with special emphasis on biological reasons and genetics.
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Behavioural and social factors influencing the epidemiology of disease.
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Transmission dynamics of leprosy to identify sources/genotypes, its presence in soil and water and establish chain of transmission in endemic pockets.
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Study addressing issues related to changing profile of disease.
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Precise epidemiological data on pooled grade-2 disabilities in rural communities.
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Leprosy in Children / dynamics of childhood leprosy

Clinical – Research
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Clinical - Laboratory studies on complications of leprosy and its management.
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Evaluating effect of newer anti-leprosy drugs/molecules.
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Studies addressing leprosy relapse and reactions.
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Detection of early bacteriologically positive Multibacillary Bacillary leprosy and its early management.
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Use of immunomodulators in relation to leprosy and tuberculosis in children.
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Use of chemoprophylaxis in household contacts.

Operational Research.
Effect of inclusion of leprosy in a community based integrated rehabilitation disability care programme.
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Research on disability prevention and identification of predictors of early nerve damage in leprosy.
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Varying distribution pattern of patients with nerve damage, acute, chronic or "silent".
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Identification of pre-clinical disease markers like nerve conduction tests etc.

Basic Research
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Studies using genomics, proteomics and other approaches to understand the host-parasite interaction and pathogenesis of the disease.

Basic Immunology
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Translational research including newer technology such for detection of M. leprae from environment.
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Tools to identify leprosy susceptibility

Drug resistance studies
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Resistance to anti-leprosy drugs.
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Studies on use of second line newer drugs for resistant and relapse cases.

Surgical aspects
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Trials on immediate post-operative active mobilization of hand following deformity correction and to investigate if the benefits of tendon transfers can be improved with early mobilization.
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Effects of early mobilization to reduce dependence on therapist to attain a satisfactory result.
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Investigation of economic and social impact of this technique in varied patient groups.
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Trials regarding the safety of immediate active mobilization protocol (IAMP) to other tendon transfers.
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Assessment of economic impact of earlier return to work by RCS patients and also the cost of care.
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Understanding the neurobiology of tendon transfer rehabilitation.
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Standard of ulcer care in leprosy

Concept proposals (limited to 5 pages) are invited from scientists of various recognized Research Institutions, Universities, Medical Colleges etc. in India. The concept proposals should include the following details.

1) Title of the concept
2) Name, address, telephone number including the mobile no. and e-mail ID of PI & Co-PI
3) Participating Institutions
4) Need for the study
5) Type of study: Hospital based (clinical), Field based (epidemiological), Lab. Based (Basic)
6) Major objectives and milestones
7) Research focus, short term goals, long term goals and scientific strategies to achieve this
8) Research Plan: Including sample size statistically calculated, place and methods of collection of samples, detailed methodology, etc.
9) Expected deliverables/Outcomes
10) Relevance/Applicability in the national interest.
11) The main strength(s) which merit(s) this support should be described in less than 200 words.
12) A brief biodata of PI and Co-PI (along with proof of expertise in form of publications).

After review the investigators of the selected proposals would be invited to submit the full proposals.  The concept proposal (one electronic copy and 15 hard copies) is to be sent on or before December 15th 2011.  The project proposals may be sent to, `
Dr. Manjula Singh,
Scientist `C',
Division of ECD,
ICMR, V. Ramalingaswami Bhawan, New Delhi 110-029


Best regards,

Dr. S. R. Narahari MD; DVD (dermatology)
Director
Institute of Applied Dermatology
6/1665, Nayaks Road, Kasaragod, Kerala, India
Phone: +91-4994-223687 & 230116; Res +914994223625
www.iad.org.in

Community care of the physically disabled due to leprosy

Leprosy Mailing List – November 7th, 2011 

Ref.:   “Community care of the physically disabled due to leprosy”

From: R. Ganapati, BLP Mumbai India

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Dear Dr Deepak,

Thank you for your comments (LML November 7^th, 2011).  I am extremely glad that you have taken interest in this piece of study.  This crucial community based investigation has evoked no response from any dermatologist or specialists in community medicine.  (Pardon my not using the words "persons affected by leprosy" throughout the text of the article).

(1)  The study aims at POWD (Prevention of Worsening Disability) rather than POD.  The work is totally carried out by village level youth including a few young cured leprosy patients.  They are a part and parcel of the villages where the patients are derived from and they are familiar with the local logistics.  Recently a donation of 2 to 3 motorcycles has greatly facilitated their mobility and has brought down the cost of commuting to remote corners of the taluka.  

After simple training they surveyed the villages and identified visible disabilities under the supervision of experienced paramedical workers mostly retired from govt service.  Diagnosis was confirmed by the staff of Bombay Leprosy Project.  As detection of grade I disabilities will involve eliciting history and physical examination, this was not given the priority.  As the prevalence of frank, uncared for mutilated limbs were rampant (prevalence rate of grade 2 disabilities alone being about 25 per 10,000) and needed doorstep services, we limited the object of the study to care of the already disabled (POWD) rather than identifying and diagnosing grade 1 which is too much to expect from the volunteers.  However, whatever  cases  came to our knowledge during surveys were examined by senior staff and handed over to the PHC with due advice on how to manage the patients.  The follow up of such cases was beyond the scope of this part of the study.  Now that some volunteers are motivated and experienced we may take this up as a separate investigation provided we get donor support. 

(2)  Almost all patients had completed the course of MDT.  The list of patients released from treatment (RFT) was obtained from the PHCs.  It was difficult to identify from the rudimentary details obtained from old records.  This list had very few patients, whereas surveys by the volunteers were the main source of patients.  Very few patients under active treatment did have grade 2 disabilities.  As they were expected to attend PHCs we could only "advice" the govt staff on care of limbs (which was mostly not followed) and our staff had to offer domiciliary care. Offering MDT was not the aim of the study as PHCs were expected to take care of this.

(3)  All the grass root level work was carried out by rural workers receiving remuneration on the days they worked.  Physiotherapists and trained staff specializing in ulcer dressing were used for offering training to volunteers in the local language.  Demonstration of the techniques like dressing and, simple exercises, usage of MCR footwear and wax therapy by the expert team was easily picked up and practiced.  Plantar ulcer is the biggest problem and most of the simple ulcers are attended to by the volunteers.  Physiotherapist and dresser are needed for refractory ulcers needing minor surgery under aseptic conditions.  This is also practiced at the door step to the maximum extent possible.  Occasionally plaster casts have also been applied.  Patients beyond the scope of domiciliary service are brought to Bombay in the vehicles for special footwear and amputation etc. 

(4)  As for "home self care", among young, motivated, health conscious patients we have found this is practised after proper counselling.  Most of the elderly patients (many of whom are alcoholics) hardly care for their limb protection if left alone.  There were instances where family members offered care after counselling.  I believe attitude towards self-care is a special subject and in the areas adopted it is possible to study this. 

(5)  I fully share Dr Sunil , your apprehensions  about the PHC staff taking over these activities.  At present they are passive observers from a distance.  However if the health planners among the govt officials study the "Shahapur Model" as it is now called and adopt it seriously, this may be a break through and will benefit the community in the distant future.

(6)  This is just a preliminary venture in a deprived tribal population living in inaccessible hilly terrains.  We have started an independent assessment by a social scientist through a questionnaire method in a total of 656 disabled patients in Shahapur taluka, though donors do not seem to be interested in evaluation.  A sample has been selected consisting of patients, household relatives, nearby community members, volunteers etc. and the interview is in progress.  The impact of the physical care from a medical angle on deformity status is also in progress.  As the cost of every item is carefully recorded, cost analysis is also contemplated.  A Research Committee of experts has been formed to offer guidance.  It is also possible that the service after some months may have to be abruptly withdrawn for want of donor support.  Research in this neglected aspect of the care of the disabled hardly has any glamour attached to it. 

I don't claim that we have carried all the technical knowledge available in institutions into the community. This is just an attempt to understand the implications of grass root level work by local village youth in the back ground of the Utopian concepts of CBR as enshrined in the definition.We have shown that penetration of technology into the remote areas is possible to some  extent and it is cost effective.   

If there are any further clarification is needed by LML readers, I will be pleased to answer. 

With best wishes 

Dr R Ganapati

Bombay Leprosy Project  

Community care of the physically disabled due to leprosy

Leprosy Mailing List – November 7th, 2011 

Ref.:   “Community care of the physically disabled due to leprosy”

From: S Deepak, Bologna, Italy

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Dear Salvatore,

I would like to thank Dr Ganapati for sharing the interesting paper about “community care for large number of persons with disabilities due to leprosy in Thane district of India” (LML Nov. 2^nd, 2011).  I have a few questions to him for a better understanding of this paper:

(1) The first phase of the project identified around 3000 persons with disabilities due to leprosy – does that include persons with WHO grade 1 disabilities (loss of sensation without visible disabilities)?

(2) In the second phase and third phase of the project, Dr Ganapati mentions identification of “500 patients” and “140 patients” – are these persons with disabilities due to leprosy or they also persons who need anti-leprosy treatment?

(3) In phase 3, what kind of staff was used for door-to-door delivery of home care? Were they professionals like physiotherapists or specialized staff? These were employed specifically by the project?

In their activities, the paper mentions different interventions but does not say anything on self-care.  Was teaching self-care part of the activities?

I understand that the paper is providing an overview but it will be interesting to understand the role played by persons affected with leprosy themselves, their families and communities in these activities.

I have some doubts about the feasibility of such level of activities being carried out by PHC staff as part of their routine work and opinion of Dr Ganapati on this issue will be useful.

Finally, were there activities related to other problems faced by persons affected with leprosy in this project such as related to social exclusion, poverty, etc.?

With best wishes,

Sunil

Dr. Sunil Deepak

AIFO, Bologna, Italy

“Community care of the physically disabled due to leprosy”

Leprosy Mailing List – November 2^nd, 2011 

Ref.:   “Community care of the physically disabled due to leprosy”

From: R Ganapati, Mumbay, India

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Dear Dr Noto,

Please find herewith enclosed the paper “Community care of the physically disabled due to leprosy”.  This article is specially published in the leading dermatology journal in the background of emerging interest among the clinicians to understand the epidemiology of skin diseases and offer services at the community level.  The study is particularly designed to create a cost effective door-step service model aiming at the target group of leprosy patients with visible disabilities (grade 2, WHO), which is the most uncared-for and difficult component of the most neglected disease.  This is just a preliminary communication of an ongoing study aimed to record the cost of services as well as the impact of the community care on the patient, the family and the people around.

Without continued donor support, this part of this unprecedented investigation may have to be compromised.  I, however hope that the donors will realize how important it is to continue the observations to a logical conclusion.  I invite your comments. 

Thanks.

With Regards,

Dr R Ganapati, Bombay Leprosy Project