improving Engagement of Young People in Early interventions: the EYE

projectDr Kathryn Greenwood Department of Psychology, University of

Sussex Sussex Partnership NHS Foundation Trust

Co-applicants and Collaborators

Institute of Psychiatry Sussex Partnership NHS Foundation Trust

University of Sussex, Psychology

Service User Research Forum SURF -Brighton

•First episode psychosis service users

•Providing consultation on research project design and grant development

•Getting rid of jargon, using right language, helping to share information

•asking service user led questions and trying to answer these? (Rose 2004; Mosavel et al. 2005)

What’s the problem with engagement?

Psychosis affects 7500 young people per year (375 in South East) (The NHS plan: DoH 2000)

Often devastating consequences • 25 years reduction in life expectancy (Parks et al

2006)

• Poor quality of life (Rossler et al. 2005)

• One third of premature deaths from suicide (Wiersma et al 1999, Bertelsen et al 2007)

Early Intervention in Psychosis in critical period improves• Symptoms, function, course, outcome and

suicide(Nordentoft et al 2004; Garety et al. 2006; Melle et al.Harris et al. 2008; Lester et al. 2009)

EIP improves outcomes in SussexKavanagh, Taylor, Lukats, Greenwood, Whale 2010

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Clinical Global Impression

Global Assessment of Function

DUP 3-12 months

DUP≤3months

DUP≤3months

DUP 3-12 months

What’s the problem with engagement?

25-30% of people disengage within 12 months(Cotton et al. 2009; Polari et al. 2009; Turner ey al. 2009)

Even in National Lead EIP service only 70% are well engaged at 12 months (Smith 2009)

Disengagement linked to younger age and other associated factors (e.g. substance use/lack of service knowledge) (Cotton et al. 2009; Schimelmann et al 2006; Krstev et al. 2004)

need more effective youth-focused service to improve engagement and outcome in this group

But a similar proportion of people drop out in Sussex

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number of people

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non-psychosis psychosis referrals

12 month outcome of 6 months referrals to EIP service

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Non-engagersEngagers

And there’s a desire to develop youth focussed services

Headstart: Getting the fit right

A discussion briefing to investigate the establishment of Headstart: an early intervention and developmentally appropriate mental health care model for young people in England

Project Team: Nick Prendergast Rick Fraser

Shaping development of research question and design

Set up and facilitation of SURF group

Shaping methodology around recruitmentsocial-educational sessions, peer researchers to aid access to those who don’t engage (and recently also ethics flyer)

Contributing to dissemination (training, leaflets, presentations)

Emphasising important outcomes (isolation and suicide).

Initial service user contribution – RDS PPI grant

Research Question

What are facilitators and barriers to engagement in EIP?

What changes should be made to services based on knowledge of engagement?

Can youth-focussed service adaptations be effectively implemented to improve engagement and address the specific needs of those who disengage from EIP service?

Phase 1- Focus Groups

Young Service users

Young PeopleSiblings/

Parents

Surrey, Sussex and Kent

12 x 6-8 people

(Purposive sampling for gender, engagement, status, family, substance use, severity)

Phase 1 - Outcome

Thematic analysis leading to

• Set of themes around facilitators and barriers to engagement from each perspective

• Set of suggested service adaptations

Phase 2 – Delphi Consultation & Implementation Science (Tansella and Thornicroft

2009)

Service managers, clinicians,

commissioners

Phase 2 - Outcome

Service adaptationEngagement

BookletTraining (1 month)

Website(Tansella and Thornicroft 2009)

SURF suggested service adaptations

Provision and use of Information• Advertising and social educational

sessions

Approaches to engagement• Social networking, sites, texting, broader

health and youth sub-culture awareness

Involvement of young people in their services

Phase 3 – Outcome Evaluation

Proportion of clients referred during a 6 month period, who drop out of service in the subsequent 12 months pre and post intervention (N=250)

Measures of quality of engagement (i.e. DNA rates, medication use, uptake of interventions)

Qualitative experience of the service adaptations from service user, carer and clinician perspective (n=18 -24)

Benefits

Improved engagement options in EIPTraining, consultancy and resources

• Better skilled staff More effective and efficient intervention

• Fewer DNA’s Better service user and staff satisfactionCost effectivenessOutcomes to inform larger national

Randomised Controlled Trial (RCT)

Phase 3 – Evaluation of outcome

0 monthsEnd of target referral period

12 monthsEnd of 12 months for follow up period

16 months Training for Intervention

17 monthsStart of target post intervention referral period

22 monthsEnd of target post intervention referral period

InterventionStart

34 monthsEnd of 12 months for follow up period

StudyStart

Study End

-6 monthsStart of target pre intetvention referral period

Thanks to theResearch for Patient Benefit Programme

£207, 000

Thank You

www.sussex.ac.uk/spriglab