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INSTRUCTION MANUAL

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					National Mental Health
      Registry

 INSTRUCTION MANUAL
          and
    DATA DEFINITION

      NMHR/training2/perak/kl/jan04/saa/a
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  What is Instruction Manual?
• Instruction Manual is a document that
  compiles the summary of the registry as
  well as all operational definition of each
  variable in Schizophrenia Notification
  Form.
• Purpose – is to standardize the data
  collection and documentation and also
  to minimize errors.

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            Content
•   Introduction
•   Objectives
•   Sponsors
•   Governing body
•   Data collection
•   CRF
•   Data definition

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                INTRODUCTION
• The National Mental Health Registry (NMHR), a Ministry
  of Health (MOH) supported service is an ongoing
  systematic collection, analysis and interpretation of
  mental health data in Malaysia. It is essential to the
  planning, implementation and evaluation of clinical and
  public health services.


• It is closely integrated with dissemination of these data
  to those who need to know.


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              INTRODUCTION
• The final link in the chain is the application of these
  data to the treatment and prevention mental
  disorders.

• A registration system includes a functional capacity
  for data collection, analysis and dissemination
  linked to clinical and public health programs. The
  information is needed for the estimation of mental
  health treatment rates, and to evaluate mental
  health outcomes in the country.

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                  OBJECTIVES :
1.        Determine the disease burden attributable to
     mental disorders by quantifying its morbidity, and
     its geographic and temporal trends in Malaysia.


2.      Identify subgroups in the population at high risk
     of mental disorders to whom prevention effort
     should be targeted.



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                   OBJECTIVES
3.     Identify potential risk factors involved in mental
     disorders.


4. Evaluate the treatment, control and prevention of
  mental disorders


5.      Stimulate and facilitate epidemiological research
     on mental disorder, e.g. generating hypotheses on
     etiology.
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                SPONSORS.
The registry is co-sponsored by :

• Department of Psychiatry, Hospital Kuala Lumpur.

• Family Health Development Division.

• Public Health Department.

• Medical Development Division.

• Clinical Research Centre, Hospital Kuala Lumpur.



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        GOVERNING BODY
The   NMHR    is governed by                       an advisory
committee, consisting of Director of Medical
Development Division, Director of Family Health
Development Division of MOH, Psychiatrist from
MOH, universities, private hospital and doctors
from Clinical Research Centre.



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       Data Collection

1. Participating Centre
• MOH Department of Psychiatry
• Department of Psychiatry
• Private Hospitals


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              Data Collection

2. Requirements of Participating Centres
•   Participating centers should have a doctor in
    charge and a site coordinator to coordinate
    the data collection process and communicate
    with data manager at CRC.



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3.       Personnel
        Doctor in charge : Her/his duties are to:

     –      Give a briefing to new doctors and paramedical staff
            about the National Mental Health Registry as stated in
            this manual.

     –      Ensure and monitor that the data collection process
            follow the methodology as stated in instruction manual.

     –      Emphasize to doctors about the nature of “carbon” on
            the Schizophrenia Notification Form. The carbon is on
            the first page of Schizophrenia Notification Form.

     –      Ensure the eligibility of writing.




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    Site coordinator (paramedics) whose duties are :

    –Request Schizophrenia Notification Forms from data manager of
    NMHR.

    –Ensure that the forms are adequate for continuous data collection (at
    least 50 set in stock)

    –Check the data are complete before sending to Mental Health
    Registry Unit

    –Send the completed form to Mental Health Registry Unit at the end of
    every month.

    –Keep the copy of the forms in the file that has been provided.

    –Complete the queries of missing compulsory data

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     Participating Patients


All NEWLY SEEN patients in the
participating centers who are
diagnosed as Schizophrenia according
to DSM IV criteria.



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       Case Record Form (CRF)

• Schizophrenia Notification Form – paper based
  system.

• Schizophrenia Outcome Study – in progress

• Census and ascertainment – in progress




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         Data Definition

What is data definition ?

•   Operational definition of each variable
    in Schizophrenia Notification Form.



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  Data collection process
The data collection process of the registry
is incorporated into the routine clinical
work process in the individual Psychiatry
Department/Clinic.



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  Schizophrenia Notification Form
To be filled in on the day of first contact with the
Schizophrenia patient. Patients information needed for
the registry are:
•Hospital
•Date of first contact
•Source of referral
•Is this a newly diagnosed patient?
•Patient’s particulars ( Section A )
•Clinical History ( Section B )
•Process of Care ( Section C )
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Only the HARD COPY of the form
(SCHIZOPHRENIA NOTIFICATION
FORM) needs to be returned to
the MENTAL HEALTH REGISTRY
         UNIT at CRC.

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        IMPORTANT
    All cases/diagnosis of
schizophrenia must be verified
  by the psychiatrist before
     sending it to MHRU


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END OF SESSION 1

    THANK YOU




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REGISTRY PROCESS
and DATA DEFINITION
    (2ND session)




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    REGISTRY PROCESS
• Data collection at SDP
• Data received at MHRU
• Acknowledgement of Data
  Receipt
• Data entry
• Data Query
• Data cleaning
• Reporting
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Definitions and instructions for
   each of variable in CRF




           NMHR/training2/perak/kl/jan04/saa/a
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           NATIONAL MENTAL HEALTH REGISTRY
     SCHIZOPHRENIA NOTIFICATION FORM (VERSION 1.8):
     DATA DEFINITION & INSTRUCTIONS ON FILLING IN THE
                          FORMS

                     GENERAL INSTRUCTIONS:
1.     For ALL NEWLY SEEN patients diagnosed as having
       schizophrenia to MOH facilities (both inpatients and
       outpatients) this form needs to be filled by the treating doctor
       using information obtained from the patient, family OR
       significant others, clinic nurse, community nurse as needed.
2.     This form needs to be filled up by one month after seeing
       the patient, and then sent to the Mental Health Registry Unit
       (MHRU) in CRC. Only send the hardcopy to the MHRU.
3.     The doctor will document the following information:

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                   Hospital

Definition
• The hospital which had identified this
  particular patient and had filled in this
  form
Instruction
• Record the name of your hospital


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Date of first contact or date of admission
Definition
• The calendar date when the patient is first
  registered in the outpatient clinic (for outpatients)
  and the date of admission (for in patients)
Instuction
• The calendar date.
• Record date (numerical), month (numerical) and
• Year (numerical)
• Example: 1 November 2002 will be recorded as :


       0 1 1 1 0 2
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           Source of Referral
Definition
• Who referred patient to the treatment centre

Instruction
• Tick the appropriate box.
• Specify if “others’



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Is this a newly diagnosed patient?
Definition
• A newly diagnosed patient is one without
  prior contact with psychiatric services
  whether at your centre or elsewhere. It
  includes patients referred by GP or
  primary care physicians for whatever
  reasons.
Instruction
• Tick the appropriate box.
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                          Name
Definition
• Patient’s name as given in an official document
   either the Identity Card, Birth Certificate or
   Passport.
Instruction
• Identity Card
• Birth Certificate
• Passport
• To record name in full as in the official document.
   Please use capital letters.
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                   Address
Definition
• This is the patient’s usual living place.
Instruction
• Usually obtained from an official
  document. But record patient’s current
  living place.



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    Telephone number (Home)
Definition
• This is the phone number of patient’s
  usual living place.

Instruction
• Numerical data.
• Please record the current home phone
  number.
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      Phone number - Office.
Definition
• This is the phone number of patient’s
  place of work

Instruction
• Numerical data.
• Please record the current workplace
  phone number

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        Identity Card Number
Definition
• The official number as indicated in patient’s
  National Registration Identity Card or other
  official document if NRIC not available.
Instruction
• NRIC number is first choice.
• Use other documents only when NRIC not available.
• Please record all the 12 digits when new NRIC is
  available.
• With the old NRIC, passport or birth certificate, record
  the alphanumerical code.
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                Age (years)
Definition
• The number of years to the nearest month
  from the patient’s stated birth date to the time
  of registration or discharge.
Instruction
• Date of birth to be recorded as first choice.
• Estimate of birth date to nearest month if
  above not available.
• Record the date of birth in numeric

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                      Gender
Definition
• Stated gender as in the official documents

Instruction
• Tick the appropriate box




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              Citizenship
Definition
• State the patient citizenship

Instruction
• Tick the appropriate box.
• Specify the country of citizenship if
  patient is not a Malaysian.

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          Ethnic group
Definition
• The patient’s racial group.
• As stated in the birth certificate.

Instruction
• Tick the appropriate box


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          Marital status
Definition
• Refers to official marriage

Instruction
• Obtained from patient
• Recorded either as married, single, divorced,
  separated or cohabiting.
• Tick the appropriate box
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          Religion
Definition
• The patient’s religion.

Instruction
• Tick the appropriate box
• Specify if ‘others’.

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              Education level
Definition
• Refers to patient’s highest education level i.e.
  the last formal education class attended or
  formal examinations sat or passed


Instruction
• Obtained from patient or relatives
• Tick the appropriate box

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     Employment status
Definition
• Refers to the patient’s longitudinal
  employment history

Instruction
• Tick the appropriate box


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      Present Occupation
Definition
• If patient is currently employed, please state
  the occupation

Instruction
• Tick the appropriate box
• Specify if ‘others’
• For No 12 and 13 please refer to Appendix 3
  in your hardcopy
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            Height (cm)

Definition
• The patient’s height at time of interview

Instruction
• Record height (numeric) in cm



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           Weight (kg)
Definition
• The patient’s weight at time of interview

Instruction
• Record weight (numeric) in kg



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   Principal psychiatric diagnosis
Definition
• State the principal diagnosis of the patient’s illness
  according to DSM- IV Classification of Mental and
  Behavioral Disorders.

Instruction
• Obtained from clinical history from patient and family.
• Diagnosis must be confirmed by a specialist.
• Specify the clinical diagnosis according to DSM IV
  Classification of Mental and Behavioral
  Disorders.
• Tick the appropriate box
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       Characteristic at onset
Definition
• Refers to the current presentation at
  notification time i.e. acute, acute on
  chronic, chronic or insidious
Instruction
• Tick the appropriate box


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             Age of onset
Definition
• To ascertain the age of onset when the
  patient ‘first had the problems’ or the
  onset of first symptoms.
Instruction
• From patient and relative.
• Record the age (numerical) in years

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Duration of untreated illness (months)
 Definition
 • The time period from onset of the first
   symptoms to initiation of neuroleptic
   treatment.

 Instruction
 • From patient and relative.
 • Record the duration (numerical) in months.
 • Please refer to appendix 4 in your hardcopy

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Co morbidities (Other psychiatric diagnosis)
  Definition
  • To indicate the presence of absence of other
    psychiatric diagnosis other than the principle
    diagnosis.
  • Includes substance abuse (not including smoking),
    antisocial personality

  Instruction
  • Obtained from clinical history from patient and
    family
  • Tick all appropriate boxes - (may have more than 1)
  • Specify if ‘others’
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     If Yes, for substance abuse
Definition
• Refers to patients with a positive history of
  drug use in the last 6 months. To identify
  which illicit substance is being abused by
  patient

Instruction
• Obtained from clinical history from patient
  and family
• Tick all appropriate boxes

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  Other past and current medical
              illness
Definition
• Other medical diagnosis like diabetes,
  hypertension etc. which patient is suffering from
  at the time of interview.
Instruction
• Obtained from clinical history from patient and
  family
• Tick all appropriate boxes
• Specify if ‘cancer’ or ‘others’.
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 Family history of schizophrenia
Definition
• To ascertain the family history of mental
  illness in the first degree relatives or
  otherwise.

Instruction
• Obtained from patient or relatives
• Tick the appropriate box
• Specify if ‘yes’


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 If ‘yes’ for family history of
         schizophrenia
Definition
• To identify the relationship of affected
  relative to the patient

Instruction
• Tick the appropriate box
• Specify if ‘others’

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Circumstances leading to contact
Definition
• To describe the nature by which patient
  was brought/ presented to your unit.

Instruction
• Tick all appropriate boxes
• Specify if ‘others’


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    Care setting at first contact
Definition
• To indicate whether patient was mainly
  treated as out patient, inpatient or under
  the community team at first contact.

Instruction
• Tick the appropriate box

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  Route and type of Pharmacotherapy at
               notification
• Route - Indicate the route of administration of the
  pharmacotherapy
• Instruction - Tick all appropriate boxes
• Type of pharmacotherapy given to patient - Indicate
  the type of anti psychotics given to patient i.e.
  typical or atypical group and the specific anti-
  psychotic treatment.
• Also to indicate whether concomitant drugs were
  used, and to specify which ones.
• Tick all appropriate boxes
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   Type of Depot injection
Definition
• Indicate the type of depot medication
  given to patient.

Instruction
• Tick the appropriate box
• Specify if ‘others’.

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      Duration of Untreated Illness
Is this a newly       Age          Age at                     DUI
diagnosed patient?                 Onset

      If YES           30            30            Age – Age at Onset = 0
                                                (accepted DUI is 0 – 12 mths)
      If YES           30            29         Age – Age at onset = 12 mths
                                                (accepted DUI is 0 – 24 mths)
      If YES           30            28             Age – Age at onset = 24
                                                            months
                                                    (accepted DUI is 12 – 36
                                                             mths)
       If NO           30            30                    <12 months

       If NO           30            29                    <24 months
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         Employment status and present
                 occupation
  Employment status              Present Occupation           Others, Specify


If Never employed is     Only tick                            None
ticked                   •Student
If Employed Part time is Only tick either
ticked                   •Professional/
                         Technical/Managerial
                         •Agricultural/Fishery/Forestry
                         •Military/Police/Fireman
                         •Factory Worker
                         •Clerical/Sales
                         •Service
                         Own Business

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        Employment status and present
                occupation
If Unemployed is tick    Only tick            NONE
                         •Homemaker/Housewife

If Self-employed is      Only tick either         Please specify the
ticked                   •Professional/technical/ present occupation
                         Managerial
                         •Agricultural/Fishery/Fo
                         restry
                         •Clerical/Sales
                         •Service
                         Own business

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        Employment status and present
                occupation
If Employed Full Time Only tick either                     Please specify the
is ticked             •Professional/                       present occupation
                      Technical/Managerial
                      •Agricultural/Fishery/
                      Forestry
                      •Military/Police/Firem
                      an
                      •Factory Worker
                      •Clerical/Sales
                      •Service

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              Data Quality
• Quality control measures must be in
  place in all the processes both at the
  source data provider and registry
  coordinating office.

 Data collected must be accurate, reliability and
 timely.



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           DATA QUERY
• Referring to Missing Compulsory Data
• Missing Compulsory Data Form is
  generated in MHRU and will be sent to
  coordinators
• Patients is identified by Pt Serial No
• Missing compulsory data form must be
  completed and fax it back to MHRU
              NMHR/training2/perak/kl/jan04/saa/a
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     ACKNOWLEDGEMENT

• Upon receiving the Schizophrenia
  Notification Forms :

– letter of acknowledgement will be
  produced by the registry unit



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         NMHR STICKERS
• Supplied by Registry Unit
• Purposes :
   to prevent repetition of registration for the
   same patient
   ease the coordinators in tracking the patient’s
   file
• Must be placed on the front page of
  patient’s case note.

               NMHR/training2/perak/kl/jan04/saa/a
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         For further information
              Please contact :
NORSIATUL AZMA BINTI MUHAMMAD DAIN
        Clinical Registry Manager
            2nd Floor, 29 & 31
              Wisma MEPRO
                 Jalan Ipoh
         52100 Kuala Lumpur.

  Tel : 603-40455408 ext : 16 (General Line)
        Tel : 603-40455248 (Direct Line)
               Fax : 603-40451252
             E-mail : nmhr@crc.gov.my
   Website : http://www.crc.gov.my/nmhr/


          NMHR/training2/perak/kl/jan04/saa/a
                        zma
NATIONAL MENTAL HEALTH
       REGISTRY


      THANK YOU



       NMHR/training2/perak/kl/jan04/saa/a
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