Defining disengagement from mental health services for individuals experiencing first episode psychosis: a systematic review.

BACKGROUND: Individuals affected by psychotic disorders frequently disengage from mental health services, although reports of this rate in the literature have ranged from 6 to 60%. One of the potential explanations for the large variation is that studies have adopted different definitions. Without a universal definition it is challenging to compare rates and factors leading to disengagement across studies. This systematic review aims to identify and compare how disengagement from psychosis services has been defined, measured and operationalised in the literature to date. METHODS: A systemic literature search of the PubMed, PsycINFO and CINAHL databases was completed following the PRISMA guidelines for systematic reviews. RESULTS: 1506 Studies were identified, of which 30 were eligible to be included. It was found that disengagement was operationalized as either a categorical or continuous variable across studies, with 18 studies classifying it as a categorical, binary variable. Only four studies applied a time period over which disengagement was said to occur, and only four studies used an instrument to measure or predict disengagement. Few studies considered similar factors in their definition, when this occurred it was because the papers came from the same research group. DISCUSSION: To truly understand the phenomenon of disengagement, studies need to have a comparable outcome variable. The need for consensus on a gold standard definition of disengagement that considers the full breadth of its complexity remains. A potential process for establishing a definition that includes set parameters, agreed upon terminology and time periods of assessment is discussed.

The rates and determinants of disengagement and subsequent re-engagement in young people with first-episode psychosis.

BACKGROUND: A core component of treatment provided by early intervention for psychosis (EI) services is ensuring individuals remain successfully engaged with the service. This ensures they can receive the care they may need at this critical early stage of illness. Unfortunately, rates of disengagement are high in individuals with a first episode of psychosis (FEP), representing a major barrier to effective treatment. This study aimed to ascertain the rates and determinants of disengagement and subsequent re-engagement of young people with FEP in a well-established EI service in Melbourne, Australia. METHOD: This cohort study involved all young people, aged 15-24, who presented to the Early Psychosis Prevention and Intervention Centre (EPPIC) service with FEP between 1st January 2011 and 1st September 2014. Data were collected retrospectively from clinical files and electronic records. Cox regression analysis was used to identify determinants of disengagement and re-engagement. RESULTS: A total of 707 young people presented with FEP during the study period, of which complete data were available for 700. Over half of the cohort (56.3%, N = 394) disengaged at least once during their treatment period, however, the majority of these individuals (85.5%, N = 337) subsequently re-engaged following the initial episode of disengagement. Of those who disengaged from the service, 54 never re-engaged, representing 7.6% of the total cohort. Not being in employment, education or training, not having a family history of psychosis in second degree relatives and using cannabis were found to be significant predictors of disengagement. No significant predictors of re-engagement were identified. CONCLUSION: In this study, the rate of disengagement in young people with first-episode psychosis was higher than found previously. Encouragingly, rates of re-engagement were also high. The concept of disengagement from services might be more complex than previously thought with individuals disengaging and re-engaging a number of times during their episode of care. What prompts individuals to re-engage with services needs to be better understood.

The association between community and service level factors and rates of disengagement in individuals with first episode psychosis.

INTRODUCTION: Individuals who experience a first episode of psychosis require early intervention and regular follow-up in order to improve their prognosis and avoid long-term negative outcomes. However, approximately 30% of individuals accessing support will end up disengaging from early intervention (EI) services. Although we know that individual factors can impact rates of disengagement, less is known about potential service and community level factors. METHODS: Data were gathered from a cohort of individuals attending a specialist youth mental health service in Melbourne, Australia between 1st January 2011 and 7th September 2014. Data were collected from clinical files and electronic medical records using a standardised audit instrument. Cox regression analysis was used to identify whether community level factors were predictors of disengagement. RESULTS: Data were available for 707 young people experiencing a first episode of psychosis. Individuals residing in neighbourhoods of higher social deprivation were at a higher relative risk of disengaging, with 4.7% increase in engagement for each increase in decile of deprivation. The introduction of a new clinic was not significantly associated with a difference in the proportion of individuals disengaging from the service and distance to service was not significantly associated with disengagement rates. DISCUSSION: Developing strategies focused on engaging young people with first episode psychosis who reside in more deprived areas may address the higher rates of disengagement these individuals experience. These finding suggest that location may not be a barrier to engagement, however services should be resourced in-line with the population demographic in their specific location.