Actores

Good social and occupational functioning have been deemed to be among the most important markers of recovery, both by experts by professional experience (Kane, Leucht, Carpenter, & Docherty, 2003), and by experts by lived experience (Pitt, Kilbride, Nothard, Welford, & Morrison, 2007). However, there is no consistent way of measuring social and occupational functioning in psychosis (Mausbach, Moore, Bowie, Cardenas, & Patterson, 2008), and no consensus criteria for a good functional outcome (Menezes, Arenovich, & Zipursky, 2006).

The current study uses time spent in ‘structured activity’ as measured by the Time Use Survey (TUS) as a measure of social recovery, conceptualised as the process of getting one’s life “back on track” after an episode of psychosis. The original version of the TUS, consisting of detailed daily diaries supplemented by a structured

129

study of how individuals in the UK spend their time (Short, 2003). The TUS was modified for use with psychiatric populations by Fowler and colleagues. The key modifications to the original measure included: (1) limiting the types of activities enquired about to those relevant to the assessment of time spent in constructive economic and structured leisure activities, and (2) omitting the requirement for participants to complete daily diaries, instead collecting all information required via a semi-structured interview. These modifications were intended to minimise the burden placed on participants and thus increase the likelihood of obtaining complete data. The modified version of the TUS has been successfully used both with

individuals with early psychosis and those at risk of psychosis (Fowler et al., 2009b; Hodgekins et al., 2015b).

During the interview the participant is asked detailed questions about how they spent their time during the previous month. Lists of activities are provided by the

interviewer and where the participant reports having engaged in a listed activity, further questions are asked to assess frequency and duration. Activities inquired about include employment, education, voluntary work, childcare, housework, leisure activities, hobbies, socialising, rest, and sleeping. Information obtained from this interview is used to provide an estimate of the average number of hours per week the participant has spent engaging in structured activity over the previous month.

Structured activity is defined as time spent engaging in work (paid and voluntary), education, childcare, housework, sport and structured leisure activities (e.g. going to the cinema, on a shopping trip, eating out, attending a sporting or cultural event, or participating in a community group).

The main strength of the use of the TUS in the context of this study is that it provides a measure of functional outcome with limited conceptual overlap with negative symptoms, reducing the risk of confounding. Many of the measures used to quantify functional outcome, including those that have been employed in studies investigating the association between negative symptoms and functioning, contain content that overlaps significantly with that of negative symptom measures. For instance, a frequently employed measure of functional impairment is the Quality of Life Scale (QLS; Heinrichs, Hanlon, & Carpenter, 1984). The QLS is a 21-item

130

interviewer-rated instrument designed to measure deficit symptoms (i.e. enduring negative symptoms) during the preceding four weeks. Items included in the QLS include social initiative and withdrawal, degree of motivation, emotional interaction, and anhedonia, all of which clearly intersect with the negative symptoms construct. Other commonly used measures of social functioning in psychosis contain items which similarly overlap with negative symptoms. For instance, the Social Functioning Scale (Birchwood, Smith, Cochrane, Wetton, & Copestake, 1990) contains items which assess the quality of a participant’s communication and ability to initiate conversations, both likely to overlap with ratings of alogia, and an item measuring social avoidance, almost certainly a confound with asociality.

A more general strength of the TUS as a measure of social functioning is its relative objectivity. The interviewer is not required to make any judgements about a

participant’s quality of life, degree of social competence, or independent living skills; instead the score derived is a direct reflection of the amount of time the participant reports having spent engaged in the activities of interest. As such, very high levels of inter-rater reliability have been observed (Hodgekins et al., 2015b). A further strength of the measure is its emphasis on activities beyond paid

employment. Definitions of social recovery have often emphasised competitive employment to the exclusion of other economically valuable and personally meaningful activities. For instance, Warner (2004) defines social recovery as: “economic and residential independence and low social disruption. This means working adequately to provide for oneself and not being dependent on others for basic needs or housing” (p.56).

In line with this definition, many studies have used paid employment as a marker of social recovery, yet this approach is problematic for a number of reasons. First, it devalues non-paid work including voluntary work, housework and childcare. The economic value of unpaid work is increasingly being recognised: the annual

economic contrition of volunteers to the UK economy has recently been estimated at £41.5 billion (Volunteering England, 2009). Moreover, unpaid work can provide a meaningful and valued life role (Pitt et al., 2007). Second, economic independence is arguably a developmentally inappropriate expectation for many individuals with FEP

131

in their teens or early twenties, whose peers will often still be engaged in education or training. Further, employment status is unlikely to provide a sufficiently sensitive measure to capture the subtle changes in social functioning which may be significant indicators of recovery following FEP. The TUS overcomes these limitations by measuring a range of economically and personally beneficial activities in addition to time spent in paid employment.

The current study builds upon a prior analysis of the National EDEN dataset conducted by Hodgekins et al. (2015a). Hodgekins et al. investigated longitudinal change in social functioning following FEP by using LCGA to model hours spent in structured activity (as measured by the TUS). Three social recovery trajectories were identified: (1) low levels of social functioning sustained over the course of the study (‘Low Stable’), (2) moderate social functioning which improved slightly over the course of the study (‘Moderate Increasing’), and (3) initially high social functioning which decreased slightly over the course of the study but remained high (‘High Decreasing’). The trajectories are represented graphically in Figure 5.1.

Figure 5.1. LCGA model with three social recovery trajectories reproduced from Hodgekins et al. (2015a).

132

The Low Stable trajectory class comprised the majority (66%) of the cohort. The Moderate Increasing class had the second largest membership, accounting for 27% of the sample. The High Decreasing trajectory was the least common: only 7% of the sample were members of this class. The availability of data on time use from both a general population sample and from individuals with psychosis has enabled

empirically grounded clinical cut-offs to be calculated (Hodgekins et al., 2015b). UK residents aged 16-35 years spend an average of 63.5 hours per week engaged in structured activity (Short, 2006). Participants engaging in less than 45 hours per week of structured activity can be defined as at risk of social disability, those engaged in less than 30 hours per week can be defined as experiencing social disability, and those engaging in less than 15 hours per week can be defined as experiencing severe social disability.

As both the Moderate Increasing and High Decreasing trajectories were engaged in amounts of activity within the non-clinical range by the end of the study period, members of both these classes might be deemed to have made a ‘good social recovery’. In the case of the High Decreasing group, whose hours per week in structured activity decreased during the follow-up period, it might seem rather counterintuitive to talk of them having made a ‘good social recovery’. However, since this group were engaging in very high levels of structured activity at baseline – over 90 hours per week on average – the decrease in their activity to levels more in line with those of their peers might equally be seen as indicative of recovery. Since the Stable Low trajectory class were consistently engaged in levels of structured activity indicative of social disability, this class might be deemed to have made a ‘poor social recovery’.

The current study aims to increase understanding of the relationship between negative symptom severity and functioning during FEP through investigating the social recovery trajectories followed by members of the negative symptoms trajectory classes described in the previous chapter. The proportion of individuals from each of the negative symptom trajectory classes who make a ‘good’ social recovery versus those who make a ‘poor’ social recovery will also be examined.

133 5.2. RESEARCH QUESTION

What is the relationship between the trajectory of an individual’s negative symptoms during the first 12 months of treatment for FEP and their social recovery trajectory over the same period?

5.3. METHODS

5.3.1. Design

This study has a longitudinal design with participants having been assessed at three time points: baseline, six and twelve months. Negative symptoms were assessed at all three time points using the PANSS. Social functioning was assessed at all three time points using the TUS.

5.3.2. Participants

Only those participants who completed the TUS at at least two time points (n = 764) were included in the analysis of social recovery trajectories. The total number of participants included in the analysis of the association between negative symptom trajectories and social recovery trajectories is 759 individuals (those National EDEN participants eligible for inclusion in the current study who were also included in the analysis of social recovery trajectories).

5.3.3. Sample Size

A power calculation carried out using G*Power Version 3.1.9.2 (Faul et al., 2007) found that to achieve 90% power with a significance level of 0.05, an estimated medium effect size and six degrees of freedom a minimum sample size of 194 would be required. Thus the study was adequately powered.

134 4.3.4. Procedure

The procedures were as described in the Chapter Three (section 3.3.4). The National EDEN measures included in the current study are described in the following section.

5.3.5. Measures

5.3.5.1. Positive and Negative Syndrome Scale (Kay, Fiszbein, & Opler, 1987)

As previously described (section 4.3.5.1), the mean score of seven PANSS items – ‘blunted affect’ (N1), ‘emotional withdrawal’ (N2), ‘poor rapport’ (N3), ‘passive social withdrawal’ (N4), and ‘lack of spontaneity and flow of conversation’ (N6), ‘motor retardation’ (G7) and ‘active social avoidance’ (G16) – was used as the measure of negative symptoms. A detailed explanation of the rationale for the use of these seven PANSS items, as opposed to the negative subscale of the PANSS, to measure negative symptom severity is provided in Chapter Three.

5.3.5.2. Time Use Survey (Short, 2003)

Social functioning was measured using the TUS. As previously outlined, the TUS is a semi-structured interview designed to provide an objective assessment of the amount of time the participant has spent engaged in structured activity over the previous month. Information obtained from this interview is used to estimate of the total time spent in structured activity each week on average over the previous month. For further information about the TUS and the rationale for its use as a measure of social functioning see section 5.1.3 above.

135 5.3.6. Analysis Plan

Statistical analyses were carried out using SPSS for Windows, Version 22 (IBM, 2013).

The social recovery trajectory class of the members of each of the negative symptom trajectory classes outlined in the previous chapter were identified by matching the participants included in Hodgekins et al.’s LCGA with those included in the negative symptoms LCGA described in the previous chapter using participants’ identifier codes. A matrix of all the possible combinations or negative symptom and social recovery trajectories was constructed and individuals assigned to cells of the matrix according to their trajectory permutation. The independence of negative symptom and social recovery trajectory class membership was then tested statistically using Pearson’s Chi-Squared test. Examination of the adjusted standardised residuals of this Chi-squared test was used to determine which combinations of the two trajectory classes were over/under-represented in the sample relative to what would be

expected were the two sets of latent classes independent of one another.

The proportion of each negative symptom trajectory class that made a ‘good social recovery’ during the study period – defined as membership of the Moderate Increasing or High Decreasing trajectory class – was calculated and represented graphically.

5.4. RESULTS

As previously outlined, Hodgekins et al. (2015a) identified three trajectories of social functioning: (1) low levels of social functioning sustained over the course of the study (Low Stable); (2) moderate social functioning which improved slightly over the course of the study (Moderate Increasing); and (3) initially high social functioning which decreased slightly over the course of the study but remained high (High Decreasing). In order to explore the relationship between these three social functioning trajectories and the four negative symptom trajectories identified, a

136

matrix of negative symptom trajectory class against social recovery trajectory class was constructed (Table 5.1).

Table 5.1. Matrix of intersections between negative symptom trajectory classes and social functioning trajectory classes.

High Decreasing Moderate

Increasing Low Stable Minimal Decreasing n = 44 (9.0%) Significantly over-represented n = 166 (34.1%) Significantly over-represented n = 277 (56.9%) Significantly under- represented Mild Stable n = 4 (4.2%) Within expected range n = 12 (12.5%) Significantly under-represented n = 80 (83.3%) Significantly over-represented High Decreasing n = 4 (3.1%) Within expected range n = 23 (17.6%) Significantly under-represented n = 104 (79.4%) Significantly over-represented High Stable n = 1 (2.2%) Within expected range n = 2 (4.4%) Significantly under-represented n = 42 (93.3%) Significantly over-represented

Note. The text in each cell refers to whether the class is over- or under-represented according to the adjusted standardised residual of the relevant Chi-Squared test.

Negative symptom trajectories and social recovery trajectories were not independent of one another (χ2 = 57.06, p = <0.001). Examination of the adjusted standardised residuals (ASR) of the Chi-squared test was used to determine which cells were over- and under-represented in the matrix. Trajectory permutations that were over- represented in the sample were: Minimal Decreasing negative symptoms and High Decreasing social functioning (ASR = 3.0); Minimal Decreasing negative symptoms and Moderate Increasing social functioning (ASR = 6.1); Mild Stable negative symptoms and Low Stable social functioning (ASR = 3.8); High Decreasing

negative symptoms and Low Stable social functioning (ASR = 3.5); and High Stable negative symptoms and Low Stable social functioning (ASR = 4.0). Trajectory combinations under-represented in the sample were: Minimal Decreasing negative

Social Recovery Trajectory Class

N eg at ive S y m pt om T ra je ct or y C la ss

137

symptoms and Low Stable social functioning (ASR = -7.3); Mild Stable negative symptoms and Moderate Increasing social functioning (ASR = -3.4); High

Decreasing negative symptoms and Moderate Increasing social functioning (ASR = - 2.6); and High Stable negative symptoms and Moderate Increasing social

functioning (ASR = -3.5).

Since both the Moderate Increasing and High Decreasing trajectories were

characterised by non-clinical levels of structured activity at 12 months, membership of either class was taken to indicate a participant having made a ‘good social

recovery’. Using this definition, 43.1% of Minimal Decreasing negative symptom participants made a good social recovery versus 6.6% of High Stable negative symptoms participants. The proportion of each negative symptoms trajectory class that made a good social recovery within the study period relative to those that did not is presented graphically in Figure 5.2.

Figure 5.2. Proportion of each negative symptoms trajectory class that followed a social functioning trajectory characterised by non-clinical levels of structured activity by 12 months (‘Good Social Recovery’) versus those with stably low levels of structured activity (‘Poor Social Recovery’).

0 10 20 30 40 50 60 70 80 90 100

Minimal Decreasing Mild Stable High Decreasing High Stable

% o f n e g a ti v e s y m p to m t ra je ct o ry c la ss

Negative symptom trajectory class

138

As Figure 5.2 makes evident, members of the Mild Stable, High Decreasing and High Stable were less likely to have made a good social recovery after 12 months of EIP treatment than were members of the Minimal Decreasing class. However, the figure also shows that the majority of those in all negative symptom trajectory classes, including members of the Minimal Decreasing class, did not make a good social recovery within the study period. Indeed, Minimal Decreasing/Low Stable was the most common negative symptom trajectory/social recovery trajectory

permutation, accounting for 36.5% of the sample, indicating that elevated negative symptoms at baseline are not a prerequisite for poor social recovery.

5.5. DISCUSSION

5.5.1. Summary of Findings

Examination of the social recovery trajectories followed by members of each negative symptom trajectory class revealed an association between the two trajectories. Those who followed a negative symptom trajectory characterised by elevated symptoms at baseline, whether or not those negative symptoms decreased over time, were significantly less likely to make a good social recovery during their first 12 months of EIP service receipt. Those who presented with consistently minimal negative symptoms were significantly more likely to make a good social recovery than would be expected were social recovery independent of negative symptom trajectory. Nonetheless, a significant proportion of the sample failed to make a good social recovery during their first 12 months of EIP despite minimal negative symptoms throughout this period, indicating that a pattern of elevated negative symptoms does not fully account for poor social recovery.

5.5.2. Interpretation, Relevance to the Literature and Theoretical Significance

The results of the current study suggest that those who have elevated negative

symptoms at baseline, even those whose negative symptoms remit early in the course of their psychosis, are less likely to achieve a good social recovery within 12 months

139

of treatment onset than those with consistently low levels of negative symptoms. This finding was partially unexpected: while it was predicted that persistent negative symptoms would be associated with stably low social functioning, it was anticipated that individuals who experienced a reduction in their negative symptoms would be likely to experience a corresponding increase in functioning. This prediction was based on the assumption that there is a direct relationship between negative symptom severity and functioning; that this was not borne out suggests that their relationship may be less straightforward than often assumed.

Given that those with initially high but decreasing negative symptoms were functioning relatively poorly prior to the emergence of their psychosis, the worse than anticipated social recovery of this class could be hypothesised to be a legacy of premorbid social disability. An individual who has failed to achieve key functional milestones prior to the onset of psychosis is likely to find it much more challenging to achieve a good level of functioning after its onset. Given that negative symptoms emerge before positive symptoms (Häfner et al., 1999, 1995), it is possible that the premorbid social disability experienced by the High Decreasing class was the result of prodromal negative symptoms. This would provide an explanation for the

relatively poor social functioning of the High Decreasing group during adolescence despite having been relatively well adjusted during adolescence. However, it is also possible that early social disability might have a role in the initial development of negative symptoms.

There is evidence that early social disability may play a role in maintaining negative symptoms once they have emerged: Alvarez-Jiminez at al. (2012) found that failure to make a functional recovery early in the course of psychosis was a significant predictor of greater negative symptom severity six years later, independent of earlier persistence of negative symptoms. However, research also suggests that negative symptoms have a role in maintaining social disability: Brill et al. (2009) used path analysis to show that negative symptoms mediate the relationship between

premorbid functioning and later functional outcomes. Taken together, these findings suggest that negative symptoms and social disability may maintain one another in a

140

vicious cycle, with poor social functioning leading to negative symptoms, which further entrench social disability.

That social functioning does not tend to improve as negative symptoms decrease would suggest that there is no corresponding ‘virtuous cycle’. It might be that the