Relatives’ Education And Coping Toolkit

Main Aim of REACT

To develop a supported self management package for relatives of people experiencing first episode psychosis (inc bipolar)

This study is funded by NIHR – research for patient benefit. However, the views and opinions expressed within it do not necessarily reflect those of DH/NIHR

REACTGrant Holders• Fiona Lobban (PI - Spectrum f.lobban@lancaster.ac.uk)• David Glentworth (CI – GMW)• Vanessa Pinfold (Rethink)• Warren Larkin (LCT)• Relative, LCT- anonymous• Graham Dunn (Manchester University)• Gillian Haddock (Manchester University)

Researchers• Laura Wainwright • Anna Clancy• Adam Postlethwaite – a.postlethwaite@lancaster.ac.uk

Supporters• Natasha Lyon• Andrea Walker• Warren Gould• Stephen Pilling• Dave Glentworth

TSC – Chair – Prof Karina Lovell

Overview

• Background and rationale for study

• Brief methodology

• Outcomes

• Future directions

Background• Impact on relatives – lots of research showing– high levels of distress (from early stage)– practical & financial burden– stigma, worry, shame, guilt, trauma, bereavement

• Government (UK) committed to support relatives– Carers contribute £119billion > total NHS costs £99 billion.

– 24% are caring for someone with mental health problems.

It is morally right to support carers – but it also makes financial senseWinefield et al 1993, Barrowclough et al 1996Tennakoon et al 2000, Lowyck et al 2004Buckner and Yeandle 2011Arksey et al 2003

Background• Evidence that Family interventions work for schizophrenia – Reduce relapse rates, admissions and impairment

• NICE (2009) recommend“Offer family intervention to all families of people with schizophrenia

who live with or are in close contact with the service user”

• Cochrane Review of Family Interventions in Bipolar– 7RCTs – no conclusions – need more studies

• NICE recommend for Bipolar (2006)“Carers and relatives should also be provided with the information and support they need”

Pharoah et al 2006, 2010NICE, 2002, 2006, 2009 Justo et al.2007

Great!

So what’s the problem?

Problems1. FI improves outcome for service users....but does this necessarily

improve outcome for relatives?– Most trials in Cochrane review have no relatives’ outcomes or secondary

2. FI not always available • 3-17% (London unpublished)

3. Evidence for effectiveness at first episode is less clear– Meta-analysis of RCTs of FI for first episode (Bird et al 2010) – SUs less likely to relapse or be admitted at end of treatment» BUT– Lack of trials (n = 3) – Some evidence may have negative impact for low EE families • Linszen et al (1996) Lenior et al (2001)– Some evidence difficult to engage first episode families • TIPS - multifamily groups (Fjell et al 2007)Maybe structured Family Intervention is too intensive for some first episode families?Could we be interfering with natural process of adjustment?

Solution?

Supported Self Management• Self management = “tasks a patient [relative] can perform to

minimise the impact of that illness on his/her health status by him/herself or with the support of a healthcare provider”

• Theoretically based on Bandura’s (1977) model of self efficacy

• Evidence for effectiveness in range of physical and mental health conditions

• Government priority for long-term health problems– Expert patient program– IAPT Clark 1991, Wanless report 2002

DoH 2005 – supporting people with longterm conditionsBarlow et al 2002

Self Management for relatives of people with psychosis

• Self help materials exist that useful for relatives eg www.mentalhealthcare.org.uk

BUT

• Generally developed by health professionals – rather than relatives

• No good evidence base for whether any of them work

• No good understanding of how best to support people to use them

• Relatives feedback– “I don’t have the time to find all this”– “How do I assess quality?”

REACT

3 Phases

Phase 1 = Develop self management intervention

Phase 2 = Feasibility trial – relatives’ outcomes

Phase 3 = Modify and disseminate

Phase 1 – Develop the Toolkit

Systematic review“what works?”

Focus Groups“what are people saying they need?”

Our “expert” opinion?How does this feed in?

Intervention Reference GroupCBT principles- understanding is key- personalised- build on existing strategies- self as agent of change- recovery focussed

REACT intervention

• Toolkit – 13 modulesIntroduction to REACTWhat is Psychosis?Managing Positive SymptomsManaging Negative SymptomsDealing with CrisesDealing with Difficult BehaviourManaging Stress – Thinking DifferentlyManaging Stress – Doing Things DifferentlyUnderstanding Mental Health Services (how to

get the help you need)Treatment OptionsThe Future Resource DirectoryJargon Buster

• Support

STR workers

6 months

One face to face meeting

Email / telephone support

Flexible to need – up to 1 hr per week

Phase 2 = RCT to assess

– How feasible in NHS?– How acceptable to relatives?– Estimate impact?

Outcome Measures

• Primary – Distress (General Health Questionnaire)

• Secondary– Carer wellbeing Scale (Rethink)– Experience of Care-giving (ECI – Szmukler et al.)

Statistical Analysis

• Intention to treat

• ANCOVA controlling for baseline scores and clinical team

• P<.05

REACT Consort Flow Diagram

Sample• GHQ = mean 34 = 65% clinical caseness• Age 51 – 55• F:M = 85: 18• Mothers 74%• Majority unemployed / retired• White British (97%)• SU = 20-25yrs - 70%male - estimated 60 months

since onset• 78% relatives were aware of a diagnosis– 69% = psychosis / schizophrenia– 22.5% = bipolar / mood disorder

Main Outcome - GHQ

GHQ Baseline mean (SD) FU mean (SD)

REACT 34.21 (15.67) 23.42 (15.2)

TAU 34.07 (19.00) 28.30 (15.42)

RC = -6.59 P = 0.03 95%CI = -12.55 to -0.64

Distress has reduced in both arms – but significantly more so in REACT compared to TAU

Effects Size = mean diff / shared standard deviation = 6 / 15 = 0.4

Outcome – CWS - wellbeing

• Esgs

Wellbeing increases in both arms – bit more in REACT but diff just fails to reach statistical significance

CWS - wellbeing Baseline mean (SD) FU mean (SD)

REACT 77.91 (27.27) 89.61 (29.71)

TAU 70.46 (31.44) 79.50 (32.47)

RC = +9.77 P = 0.053 95%CI =-0.141 to +19.68

Outcome – CWS -support

• Esgs

Support increases in both arms – significantly more in REACT

CWS - wellbeing Baseline mean (SD) FU mean (SD)

REACT 32.72 (11.86) 39.60 (10.31)

TAU 28.10 (11.05) 33. 89 (12.19)

RC = +4.86 P = 0.021 95%CI =0.77 to 8.96

Outcome – ECI negative

Negative EC has gone down on both arms – no sig diff

Baseline mean (SD) FU mean (SD)REACT 95.00 (33.94) 85.53 (43.69)

TAU 108.43 (35.42) 100.91 (34.93)

RC = -9.79 P = 0.126 95%CI = -22.41 to +2.83

Outcome – ECI - positive

ECI - pos Baseline mean (SD) FU mean (SD)

REACT 28.39 (8.59) 30.7 0(10.56)

TAU 29.68 (9.60) 30.64 (9.28)

RC = +0.87 P = 0.593 95%CI =-2.36 to 4.09

Positive EC has gone up in both arms but changes small and not significant

Qualitative Feedback• Toolkit– Overwhelming preferred paper version– Liked case studies – felt less alone• ‘When I got REACT manual, I felt better because it showed me, it first of all

it related to what was going on in my house’

• Support– Telephone and email support used• 31(61%) = telephone only• 6(12%) = email only• 7(14%) = both

– Total minutes of support over 6 months = median 125.5 mins (range 0 – 855)

– ‘Oh very reassuring. It [support] saved my life I know that sounds melodramatic, but it saved my life, I feel as if it saved my sanity in a way’

Recommendations for improvement

• Timing– Some felt needed it earlier – but others didn’t.• ‘Unfortunately we were well and truly past needing it,

by the time we came to get it’ (008 – 16.1).• ‘When they were all sorted out then I could concentrate

you see’ (032 – 9:3).• .

• Case studies – more variety please• Step families• Different cultural groups

Trial Conclusions

• Provides preliminary evidence for the feasibility and effectiveness of REACT:– Relatives and EIS keen to take part– High distress at baseline assessment– High follow-up rate– Participants find REACT acceptable and engaging– Compared to TAU - Significant positive changes on

several outcome measures for REACT arm of trial

Limitations• This was a small feasibility trial – larger trial

needed to assess reliability and generalisability of findings

• Impact of REACT on service user outcomes not assessed

• Only available in English

• No attempt to measure cost-effectiveness (but it’s cheap to deliver)

What’s next for REACT?

• A larger, more definitive trial to assess clinical and cost effectiveness of the intervention

• Process of change?– Cognitive – (IPQ)– Behavioural (Coping)

• Adaptation for British Minority Ethnic groups

• Adapting REACT for more specific disorders e.g. Bipolar Disorder

Conclusion• Supported self management interventions (e.g. REACT) potentially offer increased

access to evidence based interventions for relatives

• “It’s not very complex is it?” = criticism or compliment?

– Easy to deliver – potential to roll out anywhere (with appropriate adaptation)• IAPT SMI

– Advantages for some relatives• Non-stigmatising• Accessible to relatives where service user not engaging• Great for busy people

– Need appropriate development and evaluation

NB = Self management isn’t for everyone– Not everyone needs intensive structured family intervention – but some families do– Part of a tiered approach offering a range of options to meet a range of needs – not

cheap way to replace staff

Thanks for listening

Interested in being a site for large REACT RCT?Contact me

f.lobban@lancaster.ac.uk

References• Lobban, F., Glentworth, D., Wainwright, L., Pinfold, V., Chapman, L., Larkin, W., Dunn, G., Postlethwaite, A.,

Clancy, A., & Haddock, G., (2011) Relatives Education And Coping Toolkit - REACT. Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self management package for relatives of people with recent onset psychosis. BMC Psychiatry 11, 100

• Lobban, F., Glentworth, D., Haddock, G., Wainwright, L., Clancy, A., Bentley, R., (In Press). The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT). Journal of Mental Health

• Lobban, F., Glentworth, D., Chapman, L., Wainwright, L., Postlethwaite, A., Dunn, G., Pinfold, V., Larkin, W., Haddock, G., (submitted to British Journal of Psychiatry). Feasibility of a supported self management intervention for relatives of people with recent onset psychosis: REACT study

• Lobban, F., Postlethwaite, A., Glentworth, D., Pinfold, V., Wainwright, L., Dunn, G., Clancy, A., Haddock, G. (submitted to Clinical Psychology Review). A Systematic Review of Randomised Controlled Trials of Interventions Reporting Outcomes for Relatives of People with Psychosis

• Postlethwaite et al (in prep). Improving Early Intervention in Psychosis Services: Increasing levels of satisfaction amongst carers

• Wainwright et al (in prep) The Subjective Experience of using the Relatives Education And Coping Toolkit (REACT): A Qualitative Study of Relatives Feedback

• Wainwright et al (in prep) What do Relatives Experience when Supporting Someone in Early Psychosis?