Guidelines for strengthening leprosy referral services

Guideline for strengthening leprosy referral services

Contents

1. Introduction

2. Purpose of the guideline

3. Functions of a leprosy referral centre

4. Establish and strengthen referral network

5. Data management system

6. Annexure

IntroductionElimination of leprosy is considered as one of the success stories in our efforts to control infectious diseases. India had reported 65% decline in new leprosy cases during the period 1993-2005 and declared elimination of leprosy in 2005. This was made possible due to prioritization of leprosy through a vertical disease control programme and long history of support by non-governmental organizations. In the evolution of any vertical programme integration is inevitable. In the context of declining burden of leprosy and as part of global strategy, government of India integrated leprosy program with General Health Services (GHS) in a phased manner during 2001-2004.In 2013, India had reported 126,913 new leprosy cases contributing 59% to the global burden of leprosy. Since 2005 trends in new case detection in India remain static and show a very slow decline. Leprosy case detection and management needs clinical expertise. Retaining the vertical structure in the integrated setup created a barrier in transmission of leprosy related knowledge to general health staff and prevented them from taking ownership. In the next two to three years most of the vertical staff having clinical expertise in leprosy will get retired. So there is an urgent need to establish referral centres and strengthen referral system to manage leprosy and its related complications to overcome the challenges posed by declining leprosy expertise. Damien Foundation has long and excellent history of supporting the government in establishing leprosy referral hospitals and training centres in various parts of India. In the last few years Damien Foundation focussed its efforts in expanding the referral services for leprosy particularly in states like Bihar and Jharkhand. The number of tertiary level referral centres supported by Damien Foundation increased from three to ten spread across seven states.

Projects supported by Damien Foundation in India

Purpose and Scope of the guidelineThe main purpose of this guideline is to strengthen the functioning of leprosy referral centres and referral mechanisms. This guideline will focus on establishing and strengthening referral networks, documentation, data analysis and follow up mechanisms. Clinical aspects will not be covered and the projects can refer to guidelines developed by World Health Organization, International Federation of Anti-leprosy Associations (ILEP) and National Leprosy Eradication Programme by following links given below. http://nlep.nic.in/guide.html http://www.who.int/lep/resources/pubs/en/ http://www.ilep.org.uk/library-resources/

Functions of a leprosy referral centreWhat is a referral system?A referral can be defined as any process in which health care providers at lower levels of the health system, who lack the skills, the facilities, or both to manage a given clinical condition, seek the assistance of providers. Typically a referral system is a two way direction system Patients and information move in both the direction Communication and coordination are integral part of an effective referral system

An integrated leprosy control programme to be effective requires the support of an efficient referral system. Currently the referral system is either non-existent or is very weak. Strengthening existing referral facilities and establishing an adequate number of such facilities particularly in endemic states like Bihar and Jharkhand should be one of the key priorities for Damien Foundation. In coming years, health workers capacity to suspect and confirm the diagnosis of leprosy will decline gradually. This could be due to lack of regular training programmes in leprosy and lesser opportunity to come across new leprosy cases by health workers at primary care level. Leprosy referral hospitals will play a major role in assisting the primary health centres and private doctors in confirming the diagnosis of leprosy. Contact investigation and management will be an important component of future leprosy control strategy. Risk of exposure to leprosy infection among the general community will be low and the main risk group will be close household contacts of new leprosy cases. Referral hospitals should use every available opportunity to screen the close contacts of new leprosy cases either at the hospital or home through field staff.

Referral centres should ensure timely nerve function assessment and diagnosis and treatment of patients experiencing reactions, neuritis and related complications. Regular availability of anti reaction drugs in the form of Predicombi packs will simplify the administration of drugs by village health workers and improve the adherence to treatment dramatically. Management of severe ENL reaction is complex and should be undertaken only by physicians at referral facilities, who will adjust the dose and duration of anti reaction drugs according to patients individual needs. All the reaction cases reported to the hospital should be closely followed till the completion of their treatment.

Damien Foundation established reconstructive surgery units in 10 referral hospitals. Five new surgeons were trained and engaged in the scale up process. Priority is given for young children and adults with disabilities. At present septic surgery is given less importance by the newly trained surgeons. There is need to focus on this area to help persons affected by leprosy by healing chronic non healing ulcers. Besides these direct patient care activities, referral hospitals should be involved in teaching and research, as well as in providing technical support to lower levels of health services. During the last few years quite a good number of undetected leprosy cases were found particularly among underserved population and the health systems capacity to detect these cases and manage leprosy related complications like reactions remains as a major challenge. The field staff attached to the referral hospitals should give high priority to curative aspects like promotion of early case detection in endemic pockets and timely diagnosis, treatment and follow up of lepra reaction.

The case study highlights not only the dedicated care but also an excellent documentation Establish and strengthen referral networkThe first step towards developing effective referral system is to establish and strengthen referral network. All the referral hospitals should have the directory of referral sources along with contact details. It can easily prepared by interviewing patients and documenting the health providers visited by them before visiting our referral hospital. Based on the Health Facility Contact Analysis (HFCA), the health providers and facilities can be classified as below. Very high Priority (Example: District Nucleus Team, Medical Colleges, District hospitals & Dermatologists) High Priority (Example: Primary Health Centres) Low Priority (Example: Rural Medical Practitioners)

Any referral will involve an initiating facility and receiving facility. In our case Damien Foundation supported referral hospitals will mostly play the role of initiating facility while referring confirmed leprosy cases for MDT and as a receiving facility while managing complications. An effective referral system requires good communication and coordination between the two and a range options are available for effective communication and transfer of information, including personal visits, telephone, post and e-mail. Training for health workers and half yearly/annual referral coordination meeting with all related stakeholders in our hospital will strengthen communication. It is also important to ensure that persons affected by leprosy are provided with support for travel from remote areas when needed. When the patient completes treatment, back-referral to the original facility must include information regarding treatment, investigations already done and follow-up expected at the level of initiating facility.

Data management systemA good referral hospital should have a strong data management system. Damien Foundation has initiated the process of developing uniform registers and reports. At present data analysis and feedback is given by Damien Foundation Chennai office. During recent hospital visits it was found that the initiative and capacity to do data analysis and interpretation is lacking. So it was decided that the projects will send a one page write up on their analysis, interpretation and actions initiated along with their quarterly reports. Before and after follow up pictures should taken for all new leprosy cases, reaction patients, RCS and Plantar ulcers.

DFIT supported referral hospital should have five simple tools for efficient data management and communication. Tool 1: Referral form Tool 2: Referral IN register Tool 3: Case Sheet, New leprosy case & contact investigation register, lepra reaction register & Reconstructive Surgery registerTool 4: Discharge SummaryTool 5: Quarterly and annual hospital reportTool 6: Patient information booklet in local languageAnnexureName of facility:Referral Form / copy

Referred by:Name: Position:

Initiating Facility Name and Address:

Date of referral:

Contact detailsMobile No:Email ID:

Referred to Facility Name and Address with mobile number

Name of the patient

ID NumberAge:Sex:MF

Address

Clinical detailsClassification: MB / PBLepra Reaction: Type I / Type II/ No reaction

Details of disabilities

Diagnosis

Treatment given / Surgical procedure done

Reason for referral

Documents accompanying referral (tick applicable) Reaction Card Discharge Summary

Date referral receivedName of the patientReferred from(Name of the facility / practitioner with address and phone no.)Purpose of referralSummary of treatment provided/procedure doneDate Back referral sent

Register of Referrals IN

Name of the project: New leprosy case & contact examination register

DateNameAgeSexComplete Address with landmarkPhone numberClassification (MB/PB)Skin smear Results (If available)Has reaction at the time of diagnosis (Type I or Type II)Has disability at the time of Diagnosis (No disability/ Grade I/Grade IIIf Grade II, details of disabilities (Don't mark only tick, write in detail eg. Lt claw hand, Rt foot drop)Name & address of the health facility where patient referred for follow up treatmentMDT No & Date of initiation of treatmentDate of completion of treatmentTotal No of household contactsNo of household contacts examinedNo of new cases identified among contactsRemarks

EyeHand Feet

New leprosy case & contact examination register

RECORD OF LEPRA REACTION / NEURITIS (LRN) CASES

Name of the Project :

SI.NoName of the patientAddress with phone No.Date of RegistrationMDT No. registration No.Type of leprosyDisability status at the start of reaction treatmentLepra ReactionPreviously treated for reactionTreatment givenNew disability developed during treatment for reactionEligible for RCS (Yes/ No) Remarks

MBPBTypeNeuritisPrednisolone doses issued with datesOther drugsYesNo

IIIYesNoYes / No40302015105

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******

******

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Name of the project: Reconstructive Surgery register

Date of surgeryNameAgeSexComplete Address with landmarkDistrictPhone numberWhich Disability was corrected?When the patient developed disability? (Before MDT/During MDT/After completing MDT)Type of surgeryName of the surgeonAny significant post operative eventsIncentive received from govt (Received/ Not received ) First follow upSecond follow upThird follow upFourth follow upRemarks

Yes/NoDateAppearance (Better, Same, WorseFunction (Better, Same, Worse)Yes/NoDateAppearance (Better, Same, WorseFunction (Better, Same, Worse)Yes/NoDateAppearance (Better, Same, WorseFunction (Better, Same, Worse)Yes/NoDateAppearance (Better, Same, WorseFunction (Better, Same, Worse)

Discharge Summary

Quarterly report on Hospital Services

Name of the Project:

Place:Quarter /Year:

AOutpatients ServicesDuring the quarterCumulative from 1st January to 31st December

1 Total number of outpatients treated.Total

1aAmong S.No.1Skin diseases

Respiratory symptomatics

Others

PBMBTOTALPBMBTOTAL

2No.of new leprosy cases detected.Adult00

Children (0-14 Years)00

Total00

3Among S.No.2Relapse cases

Female00

Adult disabilityGrade- I00

Grade- II00

Child disabilityGrade- I00

Grade- II00

MaleFemaleTotalMaleFemaleTotal

4Total number of new reaction cases reported.Type I00

Type II00

5Total number of persons provided with MCR footwear.

6Total number of eligible persons referred for RCS.00

7Total number of persons underwent RCS in the project.Eye00

Hand00

Foot00

Others (Septic surgeries, nerve decompression, amputation)00

8Total provided LEP support.House (new and renovation)00

Self-employment00

Education00

BInpatients Services

During the quarterCumulative from 1st January to 31st December

9Total number of beds available for leprosy patients.

10Total number of leprosy patients admitted.

10aAmong S. NO.10Reaction

RCS

Plantar ulcers

11Total number of bed days occupied by leprosy patients

12Bed occupancy for leprosy [Sl No.11/(Sl No.9 X 90 days)]*100

13Total number of beds for TB / Drug Resistant (DR) TB

14 Total number of TB patients (Cat I & II) admitted

15 Total number of Drug Resistant TB patients admitted

16Total number of bed days occupied by TB / DR TB cases

17Bed occupancy for TB [Sl No.16/(Sl No. 13 X 90 days)]*100

18Special activities :

Leprosy Referral Hospital Receiving facilityInitiating facilityDermatology department of medical collegesDistrict Nucleus Team, Field coordinatorsPrimary health centresPrivate clinicians, Dermatologists PatientsPatients- Patients and their condition- Provide care - Decision to refer- Outward referral form- Information to patients - Empathy-Receive patients-Provide adequate counselling-Treat and documentPlan rehabilitationBack referral form Feedback to initiating facility Referral register Role of initiating facilityRole of receiving facility