National Mental Health Registry

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National Mental Health Registry

• INSTRUCTION MANUAL and
• DATA DEFINITION

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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

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

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Data Collection

• 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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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?
• Patients 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
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NATIONAL MENTAL HEALTH REGISTRYSCHIZOPHRENIA
NOTIFICATION FORM (VERSION 1.8)DATA DEFINITION
INSTRUCTIONS ON FILLING IN THE FORMS 

• GENERAL INSTRUCTIONS
• 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.
• 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.
• 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
• Patients 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 patients usual living place.
• Instruction
• Usually obtained from an official document. But
  record patients current living place.

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Telephone number (Home)

• Definition
• This is the phone number of patients 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 patients 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 patients
  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
  patients 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 patients 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 patients religion.
• Instruction
• Tick the appropriate box
• Specify if others.

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Education level

• Definition
• Refers to patients 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 patients 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 patients height at time of interview
• Instruction
• Record height (numeric) in cm

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Weight (kg)

• Definition
• The patients 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 patients
  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
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Employment status and present occupation
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Employment status and present occupation
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Employment status and present occupation
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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

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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 patients
  file
• Must be placed on the front page of patients
  case note.

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• For further informationPlease contact  
• NORSIATUL AZMA BINTI MUHAMMAD DAINClinical
  Registry Manager2nd Floor, 29 31Wisma
  MEPROJalan Ipoh52100 Kuala Lumpur. 
• Tel [phone] ext 16 (General Line)
• Tel [phone] (Direct Line)
• Fax [phone]
• E-mail nmhr_at_crc.gov.my
• Website http//www.crc.gov.my/nmhr/

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NATIONAL MENTAL HEALTH REGISTRY

• THANK YOU