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FERNZ National Data Set

FERNZ now has Ethics Approval from the Multi-Region Ethics Committee and is scheduled to started recruitment of all clients with first episode psychosis on 1st November 2007. All services interested in participating in this evaluation should be familiar with the measures (below) and have a site coordinator in place.

To date, a set of measures have been developed to give to all first episode psychosis clients presenting at early intervention services in New Zealand. This information will be collected and analysed to look at issues such as duration of untreated psychosis, lipids and medication use.

Below are the final versions of the measures as at 19/1/08

Baseline measure 1.1(PDF, 196K)

Six-month measure (PDF, 78K) Shorter form for bloods and GAF at 6-months

Discharge measure 1.1 (PDF, 214K)

Internal discharge measure (PDF, 200K) This form is for use when a client is transferred to another Early Intervention Service

Guidebook for administration of measures(PDF, 360K)

Ethics approval from the Multi-region Ethics Committee (PDF, 103K)

Any questions or final comments on the data set should be sent to Mark Turner: mark.turner@cdhb.govt.nz and they will be forwarded on to the National Executive Committee for consideration.

 

FERNZ Outcome Project Overview

Chief Investigators:

Participating Centres:

Overview

The First Episode Research New Zealand (FERNZ) Outcome Project is a national initiative aimed at developing a consistent set of measures through-out New Zealand to examine factors influencing outcome of first episode psychosis. Coordination through the New Zealand National Executive Committee has ensured that a large proportion of first episode psychosis clients in the four main centres, along with a number of smaller services, will be enrolled.

Background

The processes that make schizophrenia and other forms of psychosis a long-term disorder may be most apparent and cause the most damage in the first few years of the illness . Delay between onset of psychosis and first treatment is considerable and has been linked in research to poor outcome (Wyatt; 1991). The early phase of psychosis and schizophrenia can therefore be seen as a critical period with major implications for the prevention of disease and psychosocial deterioration.

Early Intervention in Psychosis (EIP) is a relatively new approach to managing and ameliorating the potentially devastating impact of bipolar disorder, schizophrenia spectrum disorders and other psychoses. New Zealand has probably the most comprehensive system of EIP Services available anywhere in the world and these services, while ethically justifiable, are under pressure to be reintegrated back into general mental health services.

Against this general background, a number of services across New Zealand have formed a network through the National Executive Committee to:

i) standardise research and evaluation measures conducted with this client group, and

ii) to address research questions of national interest in the development of services and in improving the outcome of this illness .

By standardising methods of evaluation across different services, the FERNZ group will provide a large cohort of participants. This will increase the statistical power of investigations into factors influencing outcome.

Over a series of collaborative research meetings, the network has agreed to a set of ‘core’ questions for investigation in a naturalistic, prospective study of outcomes in first episode psychosis managed by Early Intervention services.

Procedure

All participating services will administer baseline, 6-month, and discharge research measures to all clients with first episode psychosis. Research forms will be mailed to a central administration centre for input and analysis. Participants will be allocated a project number for identification, and personal information removed from data before it is stored in locked cabinets at the centre.

Anonymised data will be input in the Statistical Package for Social Sciences (SPSS), and stored in secure servers within a master database for analysis by the chief investigators. The primary analytical procedure will be logistic and multiple regression to evaluate outcomes in relation to categorical and continuous variables.

Measures

Following on from work conducted in the 2002 What Works? document, the following measures have been included to standardise the information routinely collected in New Zealand Early Intervention for Psychosis Services.

In addition, a series of questions are asked regarding pathways to care, demographics, physiological measures, medication use, and issues related to the client’s time with the Early Intervention Service.

An appropriate cultural measure will be added to the FERNZ project once this instrument has been finalised by Te Pou.

Core Research Questions

1 What are the participant outcomes at 2 years in terms of:

2 The pattern of medication use and its consequences on the metabolic syndrome

3 In the longer term, the database will allow examination of specific sub-groups for treatment response as well as the responses around information required for policy and management decisions.

I have added a leaflet from the National Ethics Advisory Board on 'observational research' and specifically when ethical approval is required. Note that this project has ethical approval as an observational study/audit.

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WWW http://www.earlypsychosis.org.nz
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