combined individual and family therapy in comparison to

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Page 1 of 26 1 14 21 28 1 2 3 Combined individual and family therapy in comparison to 4 5 treatment as usual for people at-risk of psychosis: A feasibility 6 7 study (IF CBT): Trial rationale, methodology and baseline characteristics 8 9 10 11 12 Authors: 13 Heather Law 1, 2 , Emma Izon 1, 2 , Karmen Au-Yeung 1 , Anthony P. Morrison 1, 2 , 15 Rory Byrne 1, 2 , Caitlin Notley 3 , Alison Yung 2 , John Norrie 4 , and Paul French 5,61 , 16 17 18 19 1 Greater Manchester Mental Health NHS Foundation Trust, 20 Research and Development 22 2 University of Manchester 23 24 3 University of East Anglia, Norwich Medical School 25 26 4 University of Edinburgh, Centre for Population Health Sciences 27 5 Manchester Metropolitan University 29 6 Pennine Care NHS Foundation Trust 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 Combined individual and family therapy in comparison to 4 5 treatment as usual for people at-risk of psychosis: A feasibility 6

7 study (IF CBT): Trial rationale, methodology and baseline characteristics 8 9 10 11

12 Authors:

13 Heather Law1, 2 , Emma Izon1, 2, Karmen Au-Yeung1, Anthony P. Morrison1, 2,

15 Rory Byrne1, 2, Caitlin Notley3, Alison Yung2 , John Norrie4, and Paul French5,61,

16 17 18

19 1 Greater Manchester Mental Health NHS Foundation Trust,

20 Research and Development

22 2University of Manchester 23 24 3University of East Anglia, Norwich Medical School 25

26 4 University of Edinburgh, Centre for Population Health Sciences

27 5 Manchester Metropolitan University

29 6 Pennine Care NHS Foundation Trust

30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 ABSTRACT 4 5 6

7 Background:

8 Current National Institute for Health and Care Excellence (NICE) guidelines for psychosis

10 recommend psychological therapy with or without family 11 12 intervention for individuals at-risk of developing psychosis.

13 NICE guidelines have a

15 specific research recommendation to investigate the clinical and cost effectiveness of

16 17 combined individual and family intervention. We report the rationale, design and 18

19 baseline characteristics of a feasibility study investigating combined Individual

20 and Family Cognitive Behavioural Therapy (IFCBT).

22 23 24 25

26 Methods:

27 The IFCBT study was a single blind, pilot randomised controlled trial (RCT) to compare a

29 combined individual and family Cognitive Behavioural Therapy (CBT) intervention to 30 31 treatment as usual. Participants were assessed using the Comprehensive Assessment of the

32 At-risk Mental State (CAARMS) and randomly allocated to either therapy or enhanced

34 treatment as usual (ETAU). All participants were followed up at six and twelve months. 35 36 Primary feasibility outcomes were recruitment and retention of participants. Secondary 37

38 outcomes included transition to psychosis and assessment of mood, anxiety and the

39 relationship of the individual and nominated family member.

41 42 43 44

45 Results:

46 We report data showing entry into the study from initial enquiry to randomisation. We report

48 the characteristics of the recruited sample of individuals (n=70) and family members (n=70) 49

50 at baseline 51 52 53 Conclusions: 54 55 The study recruited to 92% of target demonstrating it is feasible to identify and recruit 56

57 participants. Our study aimed to add to the current evidence base regarding the utility of

58 family interventions for people at-risk of psychosis.

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1 2 3 Trial registration: 4 5 ISRCTN42478021 6 7 8

This article presents independent research funded by the National Institute for Health

10 Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference 11 12 PB-PG-1014-35075). The views expressed are those of the author(s) and not necessarily

13 those of the NIHR or the Department of Health and Social Care.

15 16 17 Data Sharing 18

19 The data that support the findings of this study are available from the corresponding author

20 upon reasonable request.

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1 2 3 4 5

6 INTRODUCTION 7 8 9 10 Over the last decade there has been increasing interest in the ability to identify and 11

12 intervene early in the onset of psychosis (Fusar-Poli et al., 2013). Researchers have

13 validated operational criteria to identify those with an ‘At-risk Mental State’

15 (ARMS) for psychosis, allowing early identification of individuals at high risk of 16 17 developing Schizophrenia or related psychotic disorders. Following successful 18

19 identification of people meeting criteria for ARMS, researchers and clinicians are now

20 focusing on prevention and intervention strategies. The personal, social and economic

22 burden associated with psychosis has been a key driver for development of effective 23 24 interventions to prevent transition to psychosis. 25 26

Previous studies of transition rates and interventions for people at-risk of

28 psychosis 29 30

31 A systematic review which examined 28 studies, indicated transition rates of

32 children and adolescents from ARMS to psychosis were 40% at 6 months, between 17-

34 20% at 1 year, and between 7-21% at 2 years (Tor et al., 2017). These rates are 35 36 consistent with an earlier meta-analysis of transition outcomes, which found individuals 37

38 to be at very high risk of developing psychosis within the first 3 years of clinical

39 presentation (Fusar-Poli et al., 2012). In the long-term, the ARMS is significantly 40 41 associated with increased risk of developing psychosis, but the accuracy is modest, 42 43 demonstrating the Brief Limited Intermittent Psychotic Symptoms (BLIPS) subgroup at

44 a higher risk compared to the Attenuated Psychotic Symptom (APS) subgroup

46 (p<0.001) (Fusar-Poli et al., 2017). 47 48

49 Several randomised controlled trials (RCTs) of interventions for individuals who meet

50 criteria for ARMS have been conducted. Interventions included non-pharmacological

52 interventions such as CBT (Morrison et al., 2004; Morrison et al., 2012; Stain et al., 53 54 2016; Addington et al., 2011), family therapy (Miklowitz et al., 2014) and cognitive 55

56 remediation (Hooker et al., 2014; Urben et al., 2012); pharmacological interventions

57 using antipsychotics (Bechdolf et al., 2017; McGorry et al., 2013; McGlashan et al.,

59 60

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1 2 3 2006; Woods et al., 2003) and experimental pharmacotherapies such as omega-3 fatty 4 5 acids (Amminger et al., 2010). 6 7 8 9 10 The National Institute for Health and Care Excellence (NICE, 2014) guidelines 11

12 (guideline CG178) development group, found moderate evidence for CBT, concluding

13 that further research in complex psychological interventions is required. This was

15 consistent with findings published in NICE guidelines (2014) for psychosis and 16 17 schizophrenia that suggests antipsychotic medication should not be used as a first line 18

19 treatment of ARMS but supported the use of psychological interventions. They also

20 made a specific research recommendation for the conduct of a trial of combined

22 individual and family therapy for this group. 23 24 25 26 27 A further meta-analysis supported the findings of the NICE guideline group (van der 28 29 Gaag et al., 2013). A 2014 meta-analysis focusing specifically on CBT found that the 30

31 relative risk of developing psychosis was reduced by more than 50% for those receiving

32 CBT at every time point and concluded that CBT-informed treatment is associated with a

34 reduced risk of transition to psychosis at 6, 12 and 18–24 months, and reduced symptoms 35 36 at 12 months (Hutton & Taylor, 2014). 37 38 39 40 41 Results from previous treatment studies have been invariably mixed and often 42

43 conflicting. The evidence for a specific intervention superiority in psychosis prevention

44 remains inconclusive (Davies et al., 2018). However earlier meta-analysis that compare

46 all trial interventions (both psychosocial and pharmacological) with needs-based 47 48 interventions indicate that in group-level analysis of most ARMS individuals improve in 49

50 their symptoms and functioning over time, with transition rated reduced and delayed

51 (Nelson, Amminger & McGorry, 2018).

53 54 55 56 57 58 59 60

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Study rationale and aims

To our knowledge, there have been two published studies

examining the potential for family interventions with this group to reduce the rate of

transition to psychosis. This is despite the evidence base for family interventions for

psychosis, which show an ability to reduce relapse rates and provide better prognosis

(Pharoah, Mari, Rathbone, & Wong, 2010; Pitschel-Walz,

49 Leucht, Bäuml, Kissling, & Engel, 2001). In addition, a recent systematic review looking

50 at the family environment in ARMS found higher criticism and hostility linked to poorer

functioning and worse symptoms in families of ARMS, with similar rates of high

expressed emotion compared to First Episode Psychosis (Izon et al., 2018). Miklowitz et

56 al. (2014) found 6 of 102 participants transitioned to psychosis, with an overall risk of

57 6%. None of the 6 participants who converted were taking antipsychotic medications at

58 entry. There were fewer transitions in the FI group (2% compared to 11%) with the FI

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1 2 3 participant transitioning within 30 days of randomisation. The FI was associated with 4 5 greater improvements in attenuated symptoms over 6 months relative to control. Key 6

7 components included psychoeducation and development of a prevention plan with the

8 service-user and family. Sessions focused on improving communication and focusing on

10 enhancing problem solving skills. A further study (Landa et al, 2016) investigated 11 12 different group-and-family based CBT interventions, finding statistically significant

13 decreases in attenuated psychotic symptoms, negative symptoms, depression and

15 improvements in functioning. Family members showed significant improvements in use

16 17 of CBT skills, enhanced communication with their offspring, and greater confidence in 18

19 their ability to help. However, this was a small (N=6), open, uncontrolled study and

20 methodological shortcomings from the poor design limit its interpretation.

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34 35 36

37 Additional family studies found integrated treatment of social skills training and multi-

38 family group psychoeducation significantly reduced risk of transition compared to

40 standard care in ARMS individuals with schizotypal disorder (Nordentoft et al, 2006). 41 42 One pilot study separated individuals at the highest risk of psychosis transition to a 43

44 family-aided assertive community treatment, whilst those with lower risk were assigned

45 to community care (McFarlane et al, 2015). Although there were no differences in

47 transition, the family treatment had some benefits over community care. There is limited 48 49 literature of family RCTs with suggestions for treatment strategies combining family and 50

51 individual CBT (Stafford et al., 2013; Miklowitz et al., 2014; NICE, 2014).

52 53 The current study aimed to investigate the feasibility of a combined Individual and 54 55 Family Cognitive Behavioural Therapy (IFCBT) for people considered to be at- 56

57 risk of developing psychosis. Our primary outcome was to recruit and consent to

58 participate in a randomised trial, adhere to the intervention, retain participants across

60 both arms through assessment at follow-ups and gather data to inform outcome

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1 2 3 parameter estimates. From this, we will be able to assess the acceptability of the 4 5 intervention to service users and their key family member/carer. Furthermore, the trial 6

7 will provide initial indications of the impact of a combined approach of individual CBT

8 and family intervention on transition rates to inform the primary outcomes for a future

10 definitive randomised controlled Trial (RCT). 11 12

13 METHODS

14 The main study was a single (rater) blind randomised feasibility study with two

16 conditions; Individual and Family CBT (IFCBT) plus enhanced treatment as usual 17 18 (ETAU) vs. ETAU alone in people considered to be at high- risk of developing 19 psychosis. The trial randomly allocated participants who met criteria to a 6-month 21

package of either condition, using a secure telephone randomisation service. 22 23 Assessments were conducted by research assistants, who were blind and independent to 24

25 treatment group. Participants were made aware to conceal their allocation from the

26 research assistants when they were in correspondence and during follow-up assessment.

28 All allocation data was inaccessible to research assistants, with separate offices utilised 29 30 to retain the blind. Assessments were conducted at baseline, post treatment (6 months) 31

32 and follow-up (12 months) with both the individual and their nominated family

33 member/carer. There was also a nested qualitative study to identify key themes

35 associated with the acceptability of IFCBT in individuals at high risk of psychosis and 36 37 experiences of being involved in the trial. Additionally, family members/carers of

38 participants were interviewed to explore their unique experiences to inform these

40 outcomes. 41 42

43 The study was approved by the North West - Greater Manchester East Ethics Committee

44 (REC reference: 16/NW/0278).

46 47 48 49 50 51 52 Participants 53 54 A sample size of 60 is considered adequate for obtaining reliable sample size 55

56 estimates, which will facilitate the main aims of a feasibility study (Sim & Lewis,

57 2012). Based on requiring 60 participants across conditions, a target recruitment of 76

59 (38 per condition) over the recruitment period would allow a dropout rate of 20%. 60

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1 2 3 Formal sample size calculations were not appropriate for a pilot study aimed at 4 5 establishing feasibility and statistical significance of any findings will not be the primary 6

7 focus of the analysis. The sample will also include a family member, carer or loved one

8 as nominated by each participant (we will use the term family/carer for this throughout

10 this paper). 11 12

13 Recruitment took place across 2 mental health trusts in North West England (Greater

14 Manchester Mental Health NHS foundation Trust and Pennine Care NHS Trust)

16 primarily via Early Intervention in Psychosis teams. Participants were also able to self- 17 18 refer via posters or leaflets. Participants were required to meet the following criteria: 19 20

Inclusion Criteria

22 a) Aged 16-35. 23 24 b) Screen positive on the CAARMS for an At-risk Mental State. 25

26 c) Be living (or in regular contact) with a family member, carer or loved one.

27 d) Help seeking. 28 29

30 Exclusion Criteria 31

32 a) Receipt of anantipsychotic medication to

33 treat symptoms of psychosis. 34 35 b) Moderate to severe learning disability. 36

37 c) Organic impairment. 38 d) Insufficient fluency in English.

40 e) Significant risk to self or others. 41 42 43

44 Assessment of eligibility and outcome measures

45 Trial eligibility was assessed using the Comprehensive Assessment of At-risk

47 Mental States (CAARMS) with participants meeting criteria for one of the three ARMS 48 49 subgroups 50 51

i) trait vulnerability risk factors, defined by the presence of either a first degree

53 relative with a history of psychosis or a pre-existing schizotypal personality 54 55 disorder; 56 57

ii) state risk factors, defined by the presence of transient psychotic symptoms,

59 called Brief Limited Intermittent Psychotic Symptoms (BLIPS); 60

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1 2 3 iii) state risk factors, defined by Attenuated Psychotic Symptoms 4 5 (APS). 6 7

According to the CAARMS criteria (Yung et al., 2006), individuals within each

9 subgroup also need to display reduced or chronic low functioning and need to be help 10 11 seeking. 12 13

Full assessments were conducted by assessors blind and independent to treatment group

15 on three occasions: initial baseline, 6 months post randomisation (post-treatment for the 16 17 therapy group) and 12 months post randomisation. Individual participants were 18

19 reimbursed £20 for their time at each assessment, family member/carers £10 and both

20 received £10 for any additional qualitative interviews. All eligibility decisions were

22 confirmed by a qualified clinician and all assessors were fully trained in the measures 23 24 used. Table 1 summarises the measures used at each assessment time point. 25 26 27 28 29 [Insert Table 1 Assessment schedule] 30 31 32 33 34 The main objective was to evaluate the feasibility of the trial. Primary feasibility 35 36 outcomes were therefore: recruitment and retention of participants in both arms of the

37 study and adherence to therapy. The primary clinical outcome is transition to psychosis

39 as defined by the Comprehensive Assessment of At-risk Mental States 40 41 (CAARMS). 42 43

Secondary outcome measures for both participant and family member/carer will include

45 the Time Use Survey, Beck Depression Inventory (BDI) and the Social Interaction 46 47 Anxiety Scale (SIAS). 48

49

50 Data on health status will be collected by the EQ-5D and used to estimate the

52 health-related utility scores of participants. Furthermore, we assessed 53 54 the relationship and individual’s perceptions of their relationship between themselves 55

56 and the carer using the Family Questionnaire, Five Minute Speech Sample, Relationship

57 Structure Questionnaire (ECR-RS) and the Perceived Criticism and Warmth

59 Questionnaire. Additionally, we assessed carer burden and 60

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1 2 3 additional measures on their carer health (GHQ), and carer needs (BDI, 4 5 SIAS, EPQ) 6

7 8 9 Randomisation 10 11 Following written consent, eligible participants were randomised using Christie's secure 12

13 telephone randomisation service. Randomisation (at the individual level) was

14 independent and concealed, using randomised-permuted blocks of 6-8 and stratified by

16 age and gender. Allocation was communicated to trial manager (to monitor adherence to 17 18 the randomisation algorithm), trial therapist and made known to the participant by letter 19 from the administrator. Blinding of allocation was maintained for research assistants, 21

until all outcome measures for all subjects were collected. Blindness was maintained 22 23 using a range of measures (e.g. separate offices for therapist and researchers, protocols 24

25 for answering phones, message taking and secretarial support, separate diaries and

26 security for electronic randomisation information). A dual-purpose

28 independent Trial Steering Committee (TSC) and Data Monitoring and Ethics 29 30 Committee (DMEC) was set up to oversee the study. 31 32

Interventions

34 The intervention was a combination of Individual and Family Cognitive Behavioural 35 36 Therapy (IFCBT). The individual CBT treatment was based on that used in several 37

38 previous treatment studies (French & Morrison, 2004; Morrison et al., 2012;

39 Morrison et al., 2004). The family component was an additional 4 - 6 sessions of CBT

41 with key family members such as parents or carers, to compliment the individual work. 42 43 Sessions focused on assessment, formulation, problems and goal setting, communication

44 styles and problem solving. The family intervention followed NICE guidelines by

46 including the client and taking account of the relationship between the parent and or 47 48 carer and the young person. The family/carer component was delivered in tandem with 49

50 the individual CBT and delivered by the same therapist to maintain engagement and

51 consistency of approach. Participants received the intervention as well as enhanced

53 treatment as usual (ETAU). 54 55

56 Participants who were not allocated to the intervention arm received

57 (ETAU) alone. Irrespective of their group allocation, all Participants were able

59 to access or continue with their treatment as usual (which may include care from an

60

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1 2 3 Early Intervention Service). Early Intervention Services offer treatment to prevent 4 5 psychosis in accordance with current NICE guidelines which state they should “offer 6

7 individual cognitive behavioural therapy (CBT) with or without family intervention” and

8 “offer interventions recommended in NICE guidance for people with any of the anxiety

10 disorders, depression, emerging personality disorder or substance misuse” (NICE, 2014). 11 12

13 Enhancements to TAU involved monitoring of symptoms via structured interview, which

14 is associated with the perceived benefits including having a chance to talk at length about

16 concerns. Participants were also given a crisis card providing contact details for 17 18 appropriate local sources of help in psychiatric emergency and offered a full assessment 19 summary letter. ETAU included liaison with the clinical team, especially around risk 21

issues with a clear safety protocol to alert clinicians, should suicidal or dangerous 22 23 ideation emerge. The use of ETAU as a control has the advantage of ensuring all trial 24

25 participants derive some benefit from the trial, ensuring that it conforms to the highest

26 ethical standards.

28 29 Analysis 30

31 The main aims of the feasibility study will be delivered both via the continued monitoring

32 of descriptive data and the analysis of data at the end of the last follow-up assessment.

34 This will include reporting data in line with the Consolidated Standards of Reporting Trials 35 36 (CONSORT) 2010 Statement, showing attrition rates and loss to follow-up. Analyses of 37

38 outcomes will not be focused on statistical significance, but will concentrate on descriptive

39 statistics and confidence intervals for treatment effects. The primary clinical outcome,

41 conversion to psychosis, will be examined using a discrete-time survival model. A detailed 42 43 statistical analysis plan will be produced prior to the examination of any of the outcome

44 data.

46 47 48 49

50 Results

51 Recruitment to the trial finished in August 2018 with a final sample of 70, with 34

53 individuals allocated to ETAU and 36 allocated to the Individual and Family Cognitive 54 55 Behavioural Therapy (IF CBT). The final sample of 70 represented 92% of the original 56 target sample size of 76. Each individual participant nominated a family member/carer to 58

take part, leading to an overall final sample of 140. Initially, participants were able to 59 60 nominate multiple family/carers (some nominating up to 3). However, it became

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1 2 3 apparent that this number of family/carer participants would not be feasible to follow up 4 5 within the study. Therefore, participants were required to choose just one family/carer 6

7 for the remainder of the study. 8 9 10 11

12 Demographic characteristics of the sample can be seen in table 2. Baseline variable

13 scores including CAARMS subscale scores for participants can be found in table 3.

15 Table 4 includes baseline variable scores for family member/carer. The initial 16 17 CONSORT diagram for entry into the trial is shown in figure 1. The CONSORT 18

19 highlights a high proportion of initial enquiries, with only a third referred. This may

20 reflect Early Intervention of Psychosis services that aim to meet the needs of those at-

22 risk of developing psychosis, those who have already experienced a first episode of 23 24 psychosis, as well as service-users reporting high levels of risk and disengagement. 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 [insert Table 2: Demographics and referral sources of participants in the IFCBT Trial ] 4 5 6 7 8 9 10 11

[insert Table 3: Baseline variable scores (main participant)]

13 14 15 16 17 18

[insert Table 4: Family member/carer baseline variable scores]

20 21

22 [insert Figure 1 CONSORT diagram for entry into the study ] 23 24 25 26 27 Discussion 28

29 The IF CBT study was a single rater, blind randomised feasibility study comparing individual and

30 Family CBT (IFCBT) plus enhanced treatment as usual (ETAU), to ETAU alone in people considered to 31 32 be at high risk of developing psychosis. This pilot feasibility study was in line with the research 33

34 recommendation in the NICE guidelines for psychosis and schizophrenia in children and young

35 people (NICE., 2014), which states a need to establish the clinical and cost effectiveness of a 36 37 combined family intervention with individual CBT for those considered to be at-risk of 38

39 developing psychosis. Previous meta-analysis (Davies et a., 2018) suggests conflicting results

40 regarding the efficacy of many trials and their tested treatments. As discussed, two studies examined

42 the potential for family interventions for ARMS with reduced rates of transition to psychosis in 43

44 comparison to usual care, fewer transitions and greater improvements in attenuated symptoms in 45 the FI group relative to control (Miklowitz et al., 2014), albeit, despite methodological shortcomings 47 of one study (Landa et al., 2014). In line with treatment recommendations from NICE 48 49 guidelines (2014), the current trial is the first of its kind that compares a combined approach of 50

51 individual and family intervention to usual care. This study provides a significant first step in

52 establishing the evidence base for such a combined intervention.

54 55 56

57 Our sample was mostly male, young and predominantly White British. This is a similar

58 sample profile to other ARMS studies (McGorry, 2014; Morrison et al., 2012),

60 although the lack of ethnic diversity in the sample may limit generalisability of findings to

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1 2 3 other ethnic groups. The majority of participants were eligible for the trial due to 4 5 experiencing attenuated psychotic symptoms and having moderately to severely impaired 6

7 functioning. Again, this is consistent with other trials of the ARMS population. 8 9 The study enabled referrals from voluntary sectors, self-referrals as well as NHS sector 10 11 organisations, enabling multiple entrances into the trial. Unlike other trials of interventions 12

13 for people at-risk of developing psychosis, referrals to the study were predominantly

14 from Early Detection and Intervention in Psychosis Services. The high number of

16 referrals received in the trial and those ineligible is likely to reflect the evolving role of Early 17 18 Intervention Services to meet the needs of those at-risk of developing psychosis, as 19 well as those who have already experienced a first episode of psychosis. In terms of 21

feasibility of future studies for young people with an at-risk mental state and indeed a 22 23 definitive trial of combined family and individual interventions, this evolution of Early 24

25 Intervention Services allows researchers to have a direct referral pathway for ARMS

26 populations from clinical services into research trials, allowing an efficient and effective way

28 to identify eligible participants and offer them the option of taking part in research. 29 30

31 Interestingly, despite the increased availability of support and intervention from these clinical

32 services, many young people still opted to take part in the research trial. Only 13% declined

34 to take part after being referred, with reasons varying from not help seeking, not being 35 36 interested in the research or personal reasons for not wanting to be involved. An additional 37

38 9% decided not to take part due to not wanting family member/carer involved in their care or

39 not having anyone they could nominate to be involved. The majority of young people chose

41 to nominate their parent as the family/carer in the study, although interestingly, a quarter of 42 43 participants chose to nominate a partner to take part in the intervention, which may suggest a

44 need for a partner/spouse specific intervention. In comparison to previous family studies,

46 other relatives and friends could be involved, who were deemed to have a particular 47 48 importance to the individual. This may complicate the specific family intervention and be 49

50 difficult to compare between individuals and groups, however it may be more reflective of

51 clinical need of individuals who wish significant

53 others to be involved in their care and treatment but not a parent. 54 55 56

57 There were no refusals to be randomised following assessment of eligibility. This low rate of

58 declines/refusals suggests the study and the intervention are highly acceptable to this group,

60 and therefore recruitment to a definitive trial would be feasible.

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1 2 3 4 5 The sample presented with high levels of comorbid emotional disorders such as moderate to 6

7 severe depression and high levels of social anxiety. This is highly consistent with the existing

8 literature and sample characteristics from other trials with the ARMS population (Fusar-Poli,

10 Nelson, Valmaggia, Yung, & McGuire, 2014) . CAARMS scores highlighted high levels of 11 12 distress in relation to symptoms, particularly on the non-bizarre ideas subscale. In addition to

13 high levels of comorbidity and distress for the individuals taking part in the study, some

15 nominated family members/carers also presented with moderate depression (BDI score 20-

16 17 28), anxiety and physical health problems. 18 19

Data collection was complete in June 2019 and we will report feasibility and 21

acceptability via retention rates, completion of the intervention, safety and qualitative 22 23 feedback as outlined in this paper and our statistical analysis plan following completion of 24

25 the trial. 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 4 5

6 References 7 8

Addington, J., Epstein, I., Liu, L., French, P., Boydell, K. M., & Zipursky, R. B. (2011). A 9 10 randomized controlled trial of cognitive behavioral therapy for individuals at clinical 11

12 high risk of psychosis. Schizophrenia Research, 125(1), 54-61. 13

doi:http://dx.doi.org/10.1016/j.schres.2010.10.015

15 Amminger, G. P., Schafer, M. R., Papageorgiou, K., Klier, C. M., Cotton, S. M., Harrigan, 16 17 M. S. M., . . . Berger, G. E. (2010). Long-chain omega-3 fatty acids for indicated 18

19 prevention of psychotic disorders: A randomized, placebo-controlled trial. Archives of

20 General Psychiatry, 67(2), 146-154.

22 doi:http://dx.doi.org/10.1001/archgenpsychiatry.2009.192 23 24 Bechdolf, A., Müller, H., Stützer, H., Lambert, M., Karow, A., Zink, M., . . . Klösterkotter, J. 25

26 (2017). 108. PREVENT: A randomized controlled trial for the prevention of first-

27 episode psychosis comparing cognitive–behavior therapy (CBT), clinical 28 29 management, and aripiprazole combined and clinical management and placebo 30

31 combined. Schizophr Bull, 43, S56-57.

32 Davies, C., Cipriani, A., Ioannidis, J., Radua, J., Stahl, D., Provenzani, U., … Fusar-Poli, P.

34 (2018). Lack of evidence to favor specific preventive interventions in psychosis: a 35 36 network meta-analysis. World psychiatry : official journal of the World Psychiatric 37

38 Association (WPA), 17(2), 196–209. doi:10.1002/wps.20526 39

French, P., & Morrison, A. (2004). Early Detection and Cognitive Therapy for People at

41 High Risk of Developing Psychosis. Wiley: London. 42 43 doi:10.1002/9780470713259.ch14. 44

Fusar-Poli, P., Bonoldi, I., Yung, A. R., Borgwardt, S., Kempton, M. J., Valmaggia, L., . . .

46 McGuire, P. (2012). Predicting Psychosis Meta-analysis of Transition Outcomes in 47 48 Individuals at High Clinical Risk. Arch Gen Psychiatry, 69(3), 220-229. 49

50 doi:10.1001/archgenpsychiatry.2011.1472

51 Fusar-Poli, P., Borgwardt, S., Bechdolf, A., Addington, J., Riecher-Rossler, A., Schultze-

53 Lutter, F., . . . Yung, A. (2013). The Psychosis High-Risk State. JAMA Psychiatry, 70, 54 55 107–120. 56

57 Fusar-Poli, P., Nelson, B., Valmaggia, L., Yung, A. R., & McGuire, P. K. (2014). Comorbid

58 Depressive and Anxiety Disorders in 509 Individuals With an At-Risk Mental State:

60

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1 2 3 Impact on Psychopathology and Transition to Psychosis. Schizophrenia Bulletin, 4 5 40(1), 120-131. doi:10.1093/schbul/sbs136 6

7 Fusar-Poli, P., Rutigliano, G., Stahl, D., Davies, C., De Micheli, A., Ramella-Cravaro, V., . . .

8 McGuire, P. (2017). Long-term validity of the At Risk Mental State (ARMS) for

10 predicting psychotic and non-psychotic mental disorders. European Psychiatry, 42, 11 12 49-54. doi:https://doi.org/10.1016/j.eurpsy.2016.11.010 13

Hooker, C. I., Carol, E. E., Eisenstein, T. J., Yin, H., Lincoln, S. H., Tully, L. M., . . .

15 Seidman, L.J. (2014). A pilot study of cognitive training in clinical high risk for

16 17 psychosis: Initial evidence of cognitive benefit. Schizophr Res, 157, 314–316. 18

19 Hutton, P., & Taylor, P. J. (2014). Cognitive behavioural therapy for psychosis prevention: a

20 systematic review and meta-analysis. Psychological Medicine, 44(3), 449-468.

22 Izon, E., Berry, K., Law, H., & French, P. (2018). Expressed emotion (EE) in families of 23 24 individuals at-risk of developing psychosis: A systematic review. Psychiatry 25

26 research, 270, 661-672. 27

Landa, Y., Mueser, K. T., Wyka, K. E., Shreck, E., Jespersen, R., Jacobs, M. A., . . . Walkup,

29 J. T. (2016). Development of a group and family-based cognitive behavioural therapy 30 31 program for youth at risk for psychosis. Early Interv Psychiatry, 10, 511–521.

32 Mari, J. D. J., & Streiner, D. L. (1994). An overview of family interventions and relapse on

34 schizophrenia: meta-analysis of research findings. Psychological Medicine, 24(3), 35 36 565-578. 37

38 McFarlane, W. R., Levin, B., Travis, L., Lucas, F. L., Lynch, S., Verdi, M., . . . Spring, E.

39 (2015). Clinical and functional outcomes after 2 years in the early detection and

41 intervention for the prevention of psychosis multisite effectiveness trial. Schizophr 42 43 Bull, 41, 30–43. 44

45 McGlashan, T. H., Zipursky, R. B., Perkins, D., Addington, J., Miller, T., Woods, S. W., . . .

46 Breier, A. (2006). Randomized, double-blind trial of olanzapine versus placebo in

48 patients prodromally symptomatic for psychosis. Am J Psychiatry, 163, 790–799. 49

50 McGorry, P. (2014). Preventive strategies in emerging mental disorders in young people:

51 Clinical staging and translational research. International Journal of

53 Neuropsychopharmacology, 17, 2. 54 55 Miklowitz, D. J., O'Brien, M. P., Schlosser, D. A., Addington, J., Candan, K. A., Marshall, 56

57 C., . . . Cannon, T. D. (2014). Family-focused treatment for adolescents and young

58 adults at high risk for psychosis: results of a randomized trial. Journal of the

60

Page 19 of 26

19

9

14

21

28

33

40

47

52

59

1 2 3 American Academy of Child & Adolescent Psychiatry, 53(8), 848-858. 4 5 doi:https://dx.doi.org/10.1016/j.jaac.2014.04.020 6

7

8

10 11

12 Morrison, A. P., French, P., Stewart, S. L. K., Birchwood, M., Fowler, D., Gumley, A. I., . . .

15 Dunn, G. (2012). Early detection and intervention evaluation for people at risk of

16 17 psychosis: multisite randomised controlled trial. British Medical Journal, 344. 18

19 doi:10.1136/bmj.e2233 20

Morrison, A. P., French, P., Walford, L., Lewis, S. W., Kilcommons, A., Green, J., . . .

22 Bentall, R. P. (2004). Cognitive therapy for the prevention of psychosis in people at 23 24 ultra-high risk: randomised controlled trial. Br J Psychiatry, 185, 291-297. 25

26 doi:10.1192/bjp.185.4.291 27

Nelson, B., Amminger, G. P., & McGorry, P. D. (2018). Recent meta-analyses in the clinical

29 high risk for psychosis population: clinical interpretation of findings and suggestions 30 31 for future research. Frontiers in psychiatry, 9, 502. doi:10.3389/fpsyt.2018.00502

32 NICE. (2014). Psychosis and schizophrenia in adults: Preventing Psychosis. Retrieved from

34 NICE clinical guidelines, London: 35 36 Nordentoft, M., Thorup, A., Petersen, L., Ohlenschlager, J., Melau, M., Christensen, T. O., . . 37

38 . Jeppesen, P. (2006). Transition rates from schizotypal disorder to psychotic disorder

39 for first-contact patients included in the OPUS trial. A randomized clinical trial of

41 integrated treatment and standard treatment. Schizophr Res, 83, 29–40. 42 43 Pharoah, F., Mari, J. J., Rathbone, J., & Wong, W. (2010). Family intervention for 44

45 schizophrenia. The Cochrane Library.

46 Pitschel-Walz, G., Leucht, S., Bäuml, J., Kissling, W., & Engel, R. R. (2001). The effect of

48 family interventions on relapse and rehospitalization in schizophrenia—a meta- 49

50 analysis. Schizophrenia Bulletin, 27(1), 73-92.

51 Sim, J,, & Lewis, M. (2012). The size of a pilot study for a clinical trial should be calculated

53 in relation to considerations of precision and efficiency. J Clin Epidemiol, 65, 301- 54 55 308. 56

57 Stafford, M. R., Jackson, H., Mayo-Wilson, E., Morrison, A. P., & Kendall, T. (2013). Errata:

58 Early interventions to prevent psychosis: systematic review and meta-analysis. BMJ

60 346, f762–f762.

Page 20 of 26

20

9

14

21

28

33

1 2 3 Stain, H. J., Bucci, S., Baker, A. L., Carr, V., Emsley, R., Halpin, S., . . . Startup, M. (2016). 4 5 A randomised controlled trial of cognitive behaviour therapy versus non-directive 6

7 reflective listening for young people at ultra high risk of developing psychosis: The

8 detection and evaluation of psychological therapy (DEPTh) trial. Schizophr Res, 176,

10 212–219. 11 12 Tor, J., Dolz, M., Sintes, A., Muñoz, D., Pardo, M., de la Serna, E., . . . Baeza, I. (2017).

13 Clinical high risk for psychosis in children and adolescents: a systematic review.

15 European Child & Adolescent Psychiatry. doi:10.1007/s00787-017-1046-3

16 17 Urben, S., Pihet, S., Jaugey, L., Halfon, O., & Holzer, L. (2012). Computer-assisted cognitive 18

19 remediation in adolescents with psychosis or at risk for psychosis: A 6-month follow-

20 up. Acta Neuropsychiatr, 24, 328–335.

22 van der Gaag, M., Smit, F., Bechdolf, A., French, P., Linszen, D. H., Yung, A. R., . . . 23 24 Cuijpers, P. (2013). Preventing a first episode of psychosis: meta-analysis of 25

26 randomized controlled prevention trials of 12 month and longer-term follow-ups. 27

Schizophr Res, 149(1-3), 56-62. doi:10.1016/j.schres.2013.07.004

29 Woods, S. W., Breier, A., Zipursky, R. B., Perkins, D. O., Addington, J., Miller, T. J., . . . 30 31 Tohen, M. (2003). Randomized trial of olanzapine versus placebo in the symptomatic

32 acute treatment of the schizophrenic prodrome. Biological Psychiatry, 54(4), 453-464.

34 Yung, A. R., Stanford, C., Cosgrave, E., Killackey, E., Phillips, L., Nelson, B., & McGorry, 35 36 P. D. (2006). Testing the ultra high risk (prodromal) criteria for the prediction of 37

38 psychosis in a clinical sample of young people. Schizophrenia Research, 84(1), 57-66. 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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Pe e r

39

1 2 3 Table 1 Assessment schedule 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 Abbreviations: CAARMS (Comprehensive Assessment of At Risk Mental States); SOFAS

40 (Social and Occupational Functioning Assessment Scale); EQ-5D (Health Questionnaire);

41 GHQ (General Health Questionnaire); BDI (Beck Depression Inventory); SIAS (Social

42 Interaction Anxiety Scale); PSWQ (Penn State Worry Questionnaire); FMSS (Five Minute 43

44 Speech Sample); FQ (Family Questionnaire); ECR-RS (Relationship Structures); PCPW

45 (Perceived Criticism and Warmth Questionnaire). 46

Measure Baseline 6 months 12 month

Individual Family Individual Family Individual Family

CAARMS ✓

SOFAS ✓

EQ-5D ✓ ✓ ✓ ✓ ✓ ✓

GHQ ✓ ✓

✓ ✓

Time Use Interview

BDI ✓ ✓ ✓ ✓ ✓ ✓

SIAS ✓ ✓ ✓ ✓ ✓ ✓

PSWQ ✓ ✓ ✓ ✓ ✓ ✓

FMSS ✓

FQ ✓ ✓ ✓ ✓ ✓ ✓

ECR-RS ✓ ✓ ✓ ✓ ✓ ✓

PCPW ✓ ✓ ✓ ✓ ✓ ✓

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1 2 3 Table 2: Demographics and referral sources of participants in the IFCBT Trial 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

Variables of Interest N (%) or M (SD)

N = 70

Age at entry Range (years)

22.2 (4.9) (16-35)

Male:Female ratio 42:28

Ethnicity

White 61 (87.14%) Mixed 4 (5.71%) Asian 3 (4.29%) Other 2 (2.86%)

Highest Education

Primary (school) 9 (12.9%) Secondary (GCSEs) 30 (42.9%) Further (A levels) 22 (31.4%) Higher (University) 9 (12.9%)

Relationship with Other

Parent 43 (61.4%) Other relative 3 (2.9%) Partner 18 (25.7%) Friend or Other (E.g. neighbour) 6 (5.7%)

Living Arrangements

Parents 20 (28.6%) Partner 13 (18.6%) Alone 5 (7.1%) Parents and Siblings 20 (28.6%) Other (e.g. friends) 12 (15.7%)

Previous Receipt of CBT

Yes 23 (32.9%) No 46 (65.7%)

Referral Source

Early Detection / Intervention in Psychosis Service 51 (72.9%) Substance Misuse 5 (7.1%) CAMHS 1 (1.4%) College 1 (1.4%) Self-referral 4 (5.7%) IAPT Plus 1 (1.4%) Employment Support 2 (2.9%) Primary Care 2 (2.9%) Other e.g. previous engagement in research 3 (4.3%)

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1 2 3 Table 3: Baseline variable scores (main participant) 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46

Variable n Percentage or M (SD)

CAARMS subgroup at entry to trial

Attenuated Psychosis

56 80%

ARMS Vulnerability

3 4.3%

ARMS BLIPS 0 -

More than one ARMS group

11 15.7%

SOFAS total 70 43.09 (9.75)

BDI total 69 28.1 (13.3)

SIAS total 69 42.9 (15.9)

EQ5D health state mean 69 56.4 (23.18)

CAARMS subscale scores N Whole sample M (SD)

N Only participants experiencing the phenomenon M (SD)

Unusual thought content severity

70 2.5 (1.82) 52 3.37 (1.22)

Unusual thought content frequency

70 2.59 (1.92) 52 3.48 (1.35)

Unusual thought content distress

67 39.40 (38.20) 49 53.88 (34.78)

Non-bizarre ideas severity

70 3.07 (1.47) 63 3.41 (1.10)

Non-bizarre ideas frequency

70 3.50 (1.54) 63 3.89 (1.05)

Non-bizarre ideas distress

69 61.12 (36.31) 62 68.02 (31.51)

Perceptual abnormalities severity

70 3.50 (1.48) 63 3.89 (0.95)

Perceptual abnormalities frequency

70 2.89 (1.37) 63 3.21 (1.02)

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1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58

Perceptual abnormalities distress

68 53.13 (37.96) 61 59.23 (35.24)

Disorganised speech severity

70 1.57 (1.10) 52 2.12 (0.68)

Disorganised speech frequency

67 2.67 (1.93) 49 3.65 (1.20)

Disorganised speech distress

67 33.94 (38.40) 49 46.41 (37.90)

Aggression severity

70 2.86 (1.51) 63 3.17 (1.23)

Aggression frequency

69 3.17 (1.61) 62 3.53 (1.26)

Suicidality severity

70 2.37 (1.53) 54 3.07 (0.93)

Suicidality frequency

67 2.27 (1.85) 51 2.98 (1.53)

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1 2 3

4 Table 4: Family member/carer baseline variable scores

6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

Variables n M (SD) or N (%)

BDI total 69 11.97 (13.09),

SIAS total 69 22.83 (15.36)

EQ-5D Dimension

Mobility 69

No problems 54 (78.3%) Problems 15 (21.7%)

Self-care 69

No problems 65 (94.2%) Problems (N, %) 4 (5.8%)

Usual Activity 69

No problems 53 (76.8%) Problems 16 (23.2%)

Pain / discomfort 69

No problems 43 (62.3%) Problems 26 (37.7%)

Anxiety / depression 69

No problems 40 (58.0%) Problems 29 (42.0%)

Health State Mean 69 71.99 (18.87)

ECR-RS 69

Attachment related avoidance 20.94 (8.15) Attachment related anxiety 7.48 (5.45)

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Review

1 2 3 Figure 1 CONSORT diagram for entry into the study 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58

Excluded/decline at referral (n=65)

- Not want family involved (n= 13)

- Participant declined after referral (n= 12)

- No interest in research (n= 9)

- Over/Under age criteria (n= 6)

- Unable to contact once referred (n= 5)

- Unsuitable for the study due to risk (n=4 )

- Antipsychotic medication (n= 3)

- Not have family to nominate (n= 2)

- Family declined involvement (n= 2)

- Not help seeking (n=2)

- Already at FEP (n=1)

- Other reasons (n= 6)

Referrals (n=173)

Initial Enquiries (n=529) Excluded/decline at initial enquiry (n=356)

- Already at FEP (n= 82)

- Over/Under age criteria (n= 75)

Under 16 (n=26)

Over 35 (n= 49)

- Disengaged from services (n= 62)

- Family element (n= 29)

-Family decline (n= 1)

-Individuals not want family involved (n= 19)

-Individuals did not have family to nominate

(n= 9)

- below ARMS threshold (n=28)

- No reason but decline (n=20)

- In receipt of antipsychotics past / present (n= 15)

- Not interested in research (n= 12)

- Interpreter needed (n= 9 )

- No drop in functioning (n=3)

Assessed (n=108)

Randomised (n=70)

Ineligible at baseline (n=38)

- Already at FEP (n= 23)

- Below ARMS threshold (n= 7)

- No drop in functioning (n= 2)

- Antipsychotic medication (n=1)

- family member declined (n=1)

- Not helpseeking (n=1)

- baseline not completed (n=1)

- possible organic impairment (n=1)

- Decline at baseline (n=1)