EXTEND Newsletter: Issue 1, January 2023

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Personalised care for early psychosis: The EXTEND study

A Quarterly Newsletter   ISSUE 1. JANUARY 2023

What is the EXTEND study?

The EXTEND Early Intervention in Psychosis (EIP) study is a 3-year NIHR funded research programme across multiple sites. Oxford University, Manchester Metropolitan University, Keele University, and Pennine NHS Foundation trust are leading different components of this research.

The aim of the study is to understand how to personalise the duration of EIP services for patients and carers. EIP services are commissioned to provide care for 3 years. Patients and carers get discharged at this point, regardless of their progress towards recovery. Sometimes EIP services might use their discretion and keep patients and carers on their caseload in situations of concern. But there is no formal process or guidance on this. Understanding the circumstances when more or less EIP care is necessary is a key aim of the study’s research.

The research question will be answered through a combination of qualitative and quantitative methods. The quantitative component will analyse data collected from the NCAP audit and MHSDS dataset of information recorded by services regarding patient care. The qualitative component will identify themes from interviews with healthcare providers, patients, carers and commissioners to understand their experiences of EIP care and on their perspectives regarding personalising the length of care provided by EIP services.

The role of EXTEND-InG

The EXTEND-Involvement Group (EXTEND-InG) is a group of patients and carers with lived experience of early intervention in psychosis services. Their contribution to the research programme is to identify key areas to focus on that are most important to patients and carers. This helps the EXTEND research team to conduct meaningful research that will make a difference to those who use EIP services. The group is made up of 7 members and a service user advisor and carer advisor, who relay the group’s perspectives to the research team.

Progress to date

So far:

• NIHR funding secured
• Ethical approval for qualitative and quantitative research
• EXTEND-InG group recruited
• Data collection for qualitative research
• Stakeholder meeting

Coming next:

• PSC Independent meeting
• Granted access to quantitative data
• Analysis of data by research team and EXTEND-ING

Additional opportunities

• Opportunities for EXTEND-InG to be involved in qualitative data analysis
• Opportunities for EXTEND-InG to write commentaries on the quantitative findings.
• NCAP patient and carer representative role vacancies.
• Write a blog for us, contribute to the next newsletter, or contribute to our series of a day in the life of, or send us some artwork to feature in a future issue.

Updates

Quantitative update:

Approval for data sharing obtained from NHS Digital, Data Sharing Agreement signed November 2022

Opt-out information published and shared along with study website in November 2022. Opt-out window remains open until NCAP cohort finalised.

NCAP cohort in production with RCPsych – will be shared with NHS Digital to start data production process

Alternative data access arrangements planned via NHS England and Clinical Record Interactive Search (CRIS), resulting from discussions with wider project team including EXTEND-InG.

Qualitative update:

Recruitment has already begun from some sites. Healthcare professionals and commissioners have been recruited so far.

Recruitment from other sites will begin shortly.

Ethics amendment submitted to NIHR to allow recruitment through social media. More patients and carers will be recruited for a longitudinal study.

Data analysis has begun to identify preliminary themes.

EXTEND-InG Updates

We have had two meetings so far, where we discussed the aims of the research and opt-out procedure and key variables important to the group which have been communicated to the research team.  

The group contributed perspectives on why they are involved and their priorities for research, which are featured on the EXTEND website. 

EXTEND-InG input on Qualitative package

EXTEND-InG have been asked to provide feedback on qualitative study ethics materials and contribute to data analysis. The group have also helped coproduce a flyer for recruitment. 

EXTEND-InG input on Quantitative package

EXTEND-InG have been asked to provide commentaries to help interpret the quantitative data when this comes through.

EXTEND-InG at the stakeholder meeting 

Some members attended the stakeholder/round table meeting alongside service user advisor and carer advisor to ensure lived experience perspectives inform dissemination protocol.  

EXTEND-InG Meet and greet 

We are planning to have a meet and greet with the whole team. Look out for this in the near future. 

Forthcoming key events

• Research Programme Steering Committee (PSC) meeting due later in January (An independent governance meeting to assess whether the research programme is progressing satisfactorily.
• The research team will present the study at Royal College of Psychiatrists Congress
• The next EXTEND-InG meeting will be in February with a chance to look at the qualitative findings and interpret them.

The structure of EXTEND

Figure showing a bridge between the following groups: EXTEND involvement group; Service user and Carer Advisors; EXTEND research team

See also

Why the EXTEND study is important to EXTEND-InG and why did they want to get involved?

Contact us:

• @EXTENDEIP on Twitter
• Register for the newsletter or get involved via email: extend@psych.ox.ac.uk