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First-episode psychosis: a literature review
Affiliation.
- 1 School of Nursing, Deakin University, Burwood, Victoria, Australia. [email protected]
- PMID: 18307596
- DOI: 10.1111/j.1447-0349.2008.00515.x
This paper reports on a literature review of the impacts of first-episode psychosis on both the patient and their family and carers. The discussion focuses on the effects on the patient experiencing psychotic symptoms for the first time, including disruption to their environment, social connectedness, and future plans. Patients experiencing these symptoms can experience fear, distress, and isolation. Many of these patients are also at greater risk to themselves and others. The family and carers witnessing this psychosis may experience fear, guilt, and often carry the emotional and physical burden of care. Early intervention and treatment are crucial to potentially achieving better clinical outcomes, and to alleviating the psychological impact on patients and their families. The nurse's role in the treatment of the patient experiencing first-episode psychosis is to facilitate early intervention through recognition of symptoms and ongoing assessment, work to reduce a patient's risks, manage treatments, and work with the patient to reduce the risk of relapse.
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Are we there yet?! —a literature review of recent digital technology advances for the treatment of early psychosis
Mar rus-calafell.
1 Clinical Child and Adolescent Psychology, Ruhr-Universität Bochum, Bochum, Germany;
2 Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford, UK
Silvia Schneider
Access to psychological interventions during early stages of psychosis is essential for ameliorating outcomes and improving prognosis. However, reaching and engaging individuals at these stages of the illness can be very challenging for early intervention teams. Recent digital technological advances have emerged to overcome some of these challenges and to improve access to psychological interventions. The aim of the present literature review is to summarise main findings of relevant studies published during the last 10 years on the utilization of digital technologies (i.e., virtual reality, smartphone technology and web-based interventions) to enhance psychological treatment outcomes in early psychosis. A literature search from January 2009 to June 2019 was performed to identify relevant papers. Of 1,502 studies identified, nine met inclusion criteria for the review and only five presented results from finalised trials. Overall, these studies showed positive feasibility and acceptability results, along with preliminary evidence of improved therapy outcomes. The present review offers a state-of-the-art summary of the main features of these user-centered digital interventions for early stages of psychosis and a critical discussion about their future implementation in mental health services.
Introduction
Psychosis refers to a group of mental health conditions that affect a person’s thoughts, feelings and behavior and it is mainly characterised by hallucinations, delusions, thought disorder, negative symptoms and bizarre behaviour. It is considered one of the most impairing mental health disorders where for a significant portion of the course of the illness, the individual’s social and occupational functioning is markedly below the level achieved prior to the onset. The pre-psychosis period is the time interval between the first noticeable changes in behaviour, to the appearance of overt psychotic symptoms of diagnosable psychosis (also named full-blown psychosis) and it is called “clinical high risk” (CHR) ( 1 ). At this stage, many have already experienced a loss of cognitive and psychosocial functioning ( 2 ). The prodromal state period, which on average can last days up to 5 years ( 3 ), is a precious time to initiate treatment towards better prognosis as research has shown that reducing the duration of untreated psychosis (DUP) equipoised the effect of earlier disorder onset as a poor prognosis factor ( 4 ). Following the clinical staging model proposed by McGorry and colleagues [2006], where CHR encompasses stage I (subdivided into three sub-stages ‘a’ to ‘c’), after CHR comes stage II or full threshold first-episode of psychosis (FEP). It is considered the first acute phase or crisis, characterised by florid psychotic symptoms [sustained symptoms lasting four weeks or more as suggested by the NICE Quality standard 102 ( 5 )], and it is often detected by primary care physicians, emergency departments, welfare agencies, specialist care agencies, or drug and alcohol services ( 6 ). Early interventions during stage II have also been shown to improve the outcome of FEP through DUP reduction, improvement of treatment response, well-being and social functioning as well as secondary prevention of illness progression [stage III, ( 7 )]. Therefore, early detection and initial treatment strategy of CHR of psychosis and FEP has become a major goal of mental health services in order to delay the onset of full-blown psychosis, reducing unnecessary suffering and increasing the possibility of improved long-term outcomes ( 8 ). Early intervention for psychosis services (EIS), focusing on the special needs of young people and their families, are being implemented worldwide aiming to offer psychological and pharmacological interventions. Although preventive treatment altering the course of the illness (i.e., at CHR stage) and specialised comprehensive interventions for FEP can significantly improve disorder outcomes and their implementation is recommended ( 7 ), there are still some challenges to overcome. Main challenges include reaching individuals not accessing mental health services in order to improve detection of at-risk cases, optimising interventions and adapting them to young people new forms of communication, increasing the focus on social recovery instead of only ameliorating positive symptoms, or achieving long-term outcomes.
Digital technologies offer new opportunities for improving psychological interventions in an engaging and tailored way, as well as providing novel therapeutic contexts within which core psychological processes can be targeted in real time with immediate feedback. They can be more attractive and compelling to young people, offering them new forms of social interactions (e.g., on-line forums), flexible ways to access information and facilitating self-management (e.g., mobile apps and digital diaries) and delivering ecological valid treatments (e.g., exposure-based interventions using social virtual environments). One of the more promising technologies is virtual reality (VR). VR can be defined as technology that integrates real-time computer graphics, sounds and other sensory input to create a computer-generated world with which the user can interact ( 9 ). The ecological validity of this approach is strengthened by the sense of presence (the psychological sensation of “being there”) that individuals can experience in virtual environments ( 10 ). A key advantage of VR is that it offers researchers and clinicians the possibility not only of observing the user’s real-time behaviour when interacting with virtual agents, but also of controlling and modifying the environment and the responses of the avatars or simulated stimuli and tasks ( 11 ). The use of VR and avatars in the assessment and treatment of several dimensions of psychotic symptoms is promising ( 12 ), although research is limited to adult populations.
There is also a growing body of work and research exploring the potential of smartphone technologies to enhance therapy outcomes, improve medication adherence, and to promote self-management for people with psychosis. Mobile software applications (“apps”), sometimes combined with wearable devices (wrist band, watch or clothes connected to the phone gathering physiological information for extended periods), are the most common form of smartphone technology, also known as mHealth (or mobile Health). Smartphone technology has the potential to significantly improve mental healthcare, through extending the reach of services and providing adjunctive support to existing psychosocial interventions ( 13 ). A recent meta-analysis showed that more than 65% of people with psychosis own a smartphone, with an increase up to the 81% in the last decade, and that the majority of users are in favour of using mobile phones (>60%) to track or monitor their mental health ( 13 ). Mobile apps are providing a new form of the classic structured diary techniques in the form of momentary assessments, such as the Experience Sampling Method (ESM) ( 14 ) or Ecological Momentary Assessment (EMA) ( 15 ), defined as naturalistic methods to distribute surveys that individuals complete in the context of everyday life. Additionally, these methods have the advantage that the information is collected digitally and in real-time, using the person’s own device, and can be shared with the authorised clinician’s web-based dashboard ( 16 ). These forms of assessment can contribute to identifying the person’s individual risk factors or symptom patterns and identify treatment goals ( 17 , 18 ). Feedback on change in real time may then facilitate behavioural changes and improve therapy generalisation into the person’s daily life.
The utilization of the internet as a source of information and support for people with psychosis and their relatives has also grown considerably ( 19 ), with the potential to significantly influence health related behaviors and decisions as well as the clinician-patient relationship ( 20 ). People with psychosis use the Internet and are able and willing to use mental health services on-line (e.g., peer-to-peer support) ( 21 ). The internet provides a great opportunity to deliver cost-effective and highly accessible interventions, independent of time and place at a self-determined pace. Results from a systematic review conducted by Alvarez-Jimenez and colleagues [2014] supported the acceptability and feasibility of internet-based interventions, with several studies providing encouraging preliminary results regarding their clinical and psychosocial potential ( 22 ).
Digital technology has the potential for radical change in terms of service delivery and development of new treatments ( 23 ) and health care providers around the world are adopting and adapting digital solutions to improve current challenges, such as long waiting times to access interventions and enhancement of existing therapies’ outcomes. The aim of the present literature review is to summarise main findings of relevant studies published during the last 10 years on the utilization of digital technologies (i.e., virtual reality, smartphone technology and web-based interventions) to enhance psychological treatment outcomes in early psychosis.
Search criteria
The database used to conduct the search was PubMed. Studies for review were identified following a keyword search for the terms ‘virtual reality’ OR ‘VR’ OR ‘smartphone’ OR ‘mobile-app’ OR ‘Internet-based’ OR ‘Web-based’ AND ‘clinical high risk for psychosis’, OR ‘ultra high risk for psychosis’ OR ‘first episode of psychosis’, OR ‘early psychosis’, OR ‘early intervention services’, from January 2009 to the 7th of June 2019.
Study selection
For the purpose of this review, three forms of digital technologies were selected: VR, mobile and internet-based interventions. Based on Rus-Calafell et al. [2017], VR based interventions were defined as interventions using immersive and interactive VR environments in three-dimensional (3D) graphics presented with a head-mounted display, or that they used 2D graphics on a computer screen but were interactive, meaning that participants could navigate through the environment using either a joystick or mouse/keyboard and where they would find sufficient elements in to interact with and had some feedback from (as a response of the interaction). Following Alvarez-Jimenez et al. [2014], internet-based interventions were defined as web-based interventions enabling peer-to-peer contact, patient-to-expert communication or interactive psycho-education/therapy; mobile-based interventions were defined as interventions delivered via mobile phones using SMS, MSS, mobile or web-applications.
Considered for inclusions were studies examining the usability, feasibility, acceptability or efficacy of user-centered, VR, smartphone or Internet-based psychological interventions, including participants meeting CHR for psychosis criteria, FEP criteria and/or interventions directed exclusively to individuals registered with early intervention for psychosis services (EIS).
Studies were included in the review if they: were written in English; contained original empirical findings, and were published in a peer-reviewed journal. In case of protocols’ publications, they were included only if trial outcomes were not yet published or if they differed considerably from previous pilot work from the same group. Studies were excluded from the review if they were assessment or observational studies; family-centered interventions; symptom monitoring not part of a psychological intervention or without personalized advice; reviews; not available in English; letters to editors; theses; or book chapters.
Research findings
The initial screening (title and abstract) of 1,502 papers resulted in 28 articles being selected for in-depth evaluation. Majority of papers not selected for in-depth evaluation discussed cross-sectional results of different demographic and clinical factors associated with early psychosis, longitudinal assessment and transition to psychosis and implementation of early intervention services in different countries. Finally, nine articles were included in the present literature review. Figure 1 illustrates the articles selection process.
Study selection process.
Smartphone technology-based interventions
A total of 7 studies exploring the feasibility, acceptability and effectiveness of mobile apps for smartphone to deliver psychological interventions in early psychosis were identified. Table 1 summarises the characteristics of these studies. From these seven studies, only 3 presented actual results of a completed trial ( 24 - 26 ), being only one of these three a single-blind randomised controlled study ( 24 ). Results of the three studies confirmed feasibility and acceptability of using mobile-based interventions in early psychosis, including also preliminary evidence for improvement of therapy targets, such as loneliness ( 25 ), negative symptoms, general psychotic symptoms and mood ( 24 ). Similarly, Lim et al. [2015] and Bucci et al. [2018] included a one training session at the beginning of the intervention to introduce and guide participants on the use of the app domains, contacted the participants by phone once a week, and in both cases engagement with the apps was monetarily incentivized. The two tested interventions are based on different cognitive approaches: positive psychology and cognitive-behavioural model. The App +Connect ( 25 ) includes 16 modules based on key concepts of positive psychology (e.g., positive emotions, three good things, gratitude, kindness), with their corresponding tasks and multi-media resources (i.e., shared videos using young people with lived experiences, expert videos featuring therapists or actor videos addressing questions related to interpersonal relationships), that the participants can complete within at least 31 days [see supplementary online resources in ( 25 )]. The Actissist app ( 27 ) consists of two main parts: first part, which can be either followed by a prompt from the phone or self-initiated, focus on self-assessment through question answer exchanges on cognitive appraisals, belief conviction, emotions and associated behaviours about suspicious thoughts, voices, getting out, feeling criticised or cannabis consumption. Second part consists of supplementary content with several multi-media options that act in stand-alone fashion design to complement and support the feedback from the intervention. In contrast, Kim and colleagues [2018] included HYM as a continuation phase after completion of a group-Cognitive Behavioural Therapy for psychosis (CBTp) and their app allowed personal communication, real time personal advice and support from clinicians to participants, which also resulted in better case-management ( 26 ).
RCT, randomised controlled trial; Exp.Int., experimental intervention; TAU, treatment-as-usual; EIS, early intervention services; CHR, clinical high risk; FEP, first episode psychosis; HYM, heal your mind.
The rest of studies describe trial protocols, meaning trial results are not reported at this stage. The study by Traber-Walker and colleagues in Switzerland is the only one focusing on individuals at CHR for psychosis ( 28 ). Their intervention, Robin, will combine 16 face-to-face sessions with a therapist and a smartphone app that allows integrating contents of the therapy sessions (e.g., goals and specific coping strategies). The intervention follows CBTp and systemic approaches ( 28 ). The other smartphone-based intervention following a specific clinical stage framework is proposed by Barbeito et al. [2019] in Spain, focusing on adolescents at FEP stage who will be randomised either to an experimental intervention or treatment as usual condition ( 29 ). Those allocated to the experimental condition will have access to an app in addition to treatment as usual. The ThinkApp contains five modules: psychoeducation, recognition of symptoms and relapse prevention, problem-solving techniques, mindfulness and “contact wall” (similar to a forum or social space where users can share interests and experiences supervised by a therapist/moderator).
My journey 3 is the smartphone app designed by Steare and colleagues and it will be tested in a feasibility randomised trial including six EIS for psychosis in North London ( 30 ). Those allocated to the experimental intervention will receive one training session on the app and will be allowed to use it for a period of 12 months. The version of the app used in this study includes structured intervention components based on recovery and relapse prevention interventions. Although the number of contacts with clinicians is not controlled in the study, clinicians will be encouraged by the research team to discuss with participants recovery goals and relapse prevention plans in routine appointments and check on app usage. Similarly, Husain and colleagues will test the feasibility of the TechCare app with 12 service userd from the EIS for psychosis in Lancashire ( 31 ). The app is based on seminal work by Kingdon & Turkington on CBTp ( 32 ) in combination with participant tailored intelligent real-time therapy (iRTT): an intelligent machine learning algorithm which provides techniques in real time based on breach of assessment thresholds and recommendations on the most popular self-help interventions included in the app (e.g., thought-feeling-behaviour relationships, stress models, techniques for managing mood and goal setting).
Internet-based interventions
Two studies discussing the design, implementation and effectiveness of on-line psychological therapy for CHR and FEP individuals were identified in the literature search ( 33 , 34 ). Both interventions have been designed by the same research group in Australia and they focus on the enhancement of the person’s social functioning and social connectedness, as well as too sustain benefits of early intervention beyond discharge from specialist FEP services ( 33 ). These two on-line systems, HORYZONS and MOMENTUM, adopt a “ Moderate On - line Social Therapy ” (MOST) ( 35 ) conceptual model which integrates: (I) peer-to-peer on-line social networking; (II) individually tailored interactive psychosocial interventions; and (III) involvement of expert mental health and peer moderators to ensure the safety of the intervention. However, the content of the interventions differs as they target different groups.
HORYZONS includes a first stage where the person is guided through psychoeducation models based on previous work of this group and targeting risk factors for psychosis relapse and salient domains in the early recover process ( 33 ). Another essential part of the system is ‘the café’ where users and moderators can post comments, information, upload files and ‘like’ different content. An information wall, which includes activity of individual users, homepage, a ‘job zone’ and other moderated social networking features are other components of the system. This online intervention adopts a positive psychology approach ( 36 ) where the users are guided and encouraged to identify, discuss and exercise key personal strengths within the online environment and in real-life to enhance self-esteem, foster social functioning ( 37 ) and reduce depression. The results of the pilot study were very encouraging, showing that the online system was feasible, engaging and say and showed preliminary positive effects on social connectedness and empowerment in young people with FEP.
MOMENTUM focus on promoting a circular relationship between wellbeing and functioning: by improving self-efficacy, social support, and subjective wellbeing there will be a reciprocal effect on each other that will motivate the young person to initiate and persist in social activities and improve overall social functioning ( 34 ). The interactive therapy modules (or ‘steps’) specifically address: (I) personal strengths, (II) mindfulness and (III) connecting through others. It also includes a moderated online social network (the café) to foster social support and a group problem solving function designed to promote self-efficacy and interpersonal problem solving (‘Talk it Out’). The system allows two type of moderation: expert and peer moderators. Results have shown that MOMENTUM is an engaging and safe on-line system for individuals at CHR for psychosis. Furthermore, results at follow-up have shown significant positive effects on social functioning that have been associated to changes in therapeutic targets such as strengths use, mindfulness skills and social support.
Virtual reality-based interventions
Although the search retrieved some original articles on the utilisation of VR in early psychosis, none of the articles met the inclusion criteria of the present review.
Discussion and clinical implications
To our knowledge, this is the first literature review focusing on psychological interventions using digital technology to treat people within the early clinical stages of psychosis.
Based on the results of the present literature review, the technology that has been wider used and applied to improve psychological treatments in early psychosis is mobile-based interventions, either on the form of blended therapy combining face-to-face therapy with mobile app or as tradition face-to-face therapy delivered and operationalised through smartphones apps. The majority of the studies exploring mobile-based interventions in early psychosis up to this date are protocol studies and feasibility studies with small samples, being the study conducted by Bucci et al. [2018] the only controlled randomised trial. This could be explained by the fact that RCT (considered the gold standard for efficacy testing) are very time-consuming and often do not allow the technology to be changed on the course of the study. This can have a detrimental effect on digital technologies as they require for constant updating and maintaining and can be quickly obsolete. All of the studies included in the present review used different mobile apps that have been design to target psychological mechanisms that may contribute to the onset or maintenance of psychotic symptoms, based on traditional CBT or third wave CBT approaches [described as new developments in CBT which emphasise the relevance of acceptance, mindfulness and emotions, the relationship, values, goals, and meta‐cognition ( 38 )] and in the context of a psychological intervention. The literature search also retrieved some studies in early psychosis using mobile-based technology that can assist other forms of mental health support, such as symptom monitoring or medication adherence, not necessarily in the context of a theory-driven protocol-based psychological intervention ( 39 - 41 ). However, the study of the effects and mechanisms of change of mobile-based technology in the form of continuous monitoring of symptoms outside a treatment model deserve further attention in the research community ( 42 ). A step forward on smartphone apps for psychosis is the one proposed by Cella and colleagues, where they combine a self-assessment mobile phone app and a wrist worn device which continuously record heart rate variability (HRV) and electrodermal activity (EDA) in people with FEP, with the purpose of identifying relapse bio-signatures that can inform refined early interventions for psychosis ( 43 ). Finally, it is essential to highlight that all the studies testing smartphone-based interventions reviewed include acceptability and safety measures, with positive findings on those reporting study results. This is particularly interesting, as further research on users’ views have shown that data protection and safety is one of the major concerns of early psychosis service users ( 44 ), who also expressed that endorsement of the technology by a valid institution (e.g., university or health service) would serve them as a guarantee and would increase digital interventions uptake.
As stated before, the two identified psychological online intervention for early psychosis have been designed by the same clinical and research group at the E-Health division of Orygen, the National Centre of Excellence in Youth Mental Health in Australia. These pioneer interventions use social media platforms that put together psychoeducational therapy units with a forum-like feature that allows users to talk about their personal problems and find peer-support. HORYZONS and MOMENTUM are tailored to FEP and CHR therapy targets and have been proven feasible, acceptable and engaging. Although they have only been tested in small feasibility studies, results are very encouraging and the MOST technology is also being implemented to support young people recovering from depression and carers of young people with mental health issues. Further developments of this technology could even incorporate advanced computational and artificial intelligence methods, such as chatbots (a computer programme that mimics conversation with users via a chat interface, either text or voice based) or individualised therapy suggestions based on linguistic analysis of newsfeed postings ( 35 ). The Australian group has recently published the protocol of the randomised controlled trial of HORYZONS ( 45 ), which includes 170 people with FEP, and the results of this study are expected by the end of 2019 or beginning of 2020. In terms of other online tools to support detection and intervention for early psychosis, the literature search retrieved two studies describing online platforms for the screening of early signs of psychosis and detection of CHR ( 46 ) and to monitor conversion to full-blown psychosis ( 47 ).
Based on our literature search, there is a clear lack of studies exploring the potential of VR-based interventions for early psychosis. Nonetheless, the search retrieved four studies using VR to assess different psychological processes associated to paranoid ideation in people at CHR for psychosis conducted by the research team lead by Dr. Lucia Valmaggia at the Institute of Psychiatry, Psychology and Neuroscience VR Lab ( 48 - 51 ). This group has also developed a virtual school canteen environment that aims to assess early signs of psychosis in young adolescents, which is currently been tested in a school-based sample (Gayer-Anderson et al. , in preparation). It is important to point out that relevant clinical trials using VR technology to treat psychosis are including or have included participants being referred from EIS ( 52 , 53 ). These studies are using VR environments as a mean to expose people with psychosis to feared situations with the objective to drop defence behaviours and relearning safety, and test harm expectations. Crucially VR environments also allow ‘embodied’ cognitive processes to be targeted ‘in action’, such as in AVATAR therapy ( 54 , 55 ), with the ultimate aim that improvements made in VR environments will generalise to real-life contexts. Different forms of VR involving other users and or social processes, such as collaborative virtual environments or self-embodiment paradigms, could also help to improve social functioning in early psychosis.
Finally, it is important to stress the limitations of the present literature review. Firstly, only one database has been used to do the search of studies relevant to the main topic of this review. Nonetheless, based on the purpose of providing a general summary or overview of the selected topic and considering the scope of the selected database, the procedure followed is valid to generate qualitative data to provide a state-of-the-art overview. Secondly, the present review does not include a formal assessment of the quality of the studies reviewed. Ultimately, the definition of “early psychosis” has been formulated based to the clinical staged model proposed by McGorry and colleagues ( 6 ) instead of on traditional categories of psychosis. This model can be defined as a refined form of diagnosis with the advantages of taking into account the extent of progression of the condition at a particular point in time, where a person lies along the continuum of the course of illness ( 56 ), and guiding treatment selection ( 57 ).
Future research: Are we there yet?!
Young people often fail to engage adequately with services preventing them from obtaining long-term benefits from treatment ( 58 ). Main reasons for this issue are (I) young people do not reach out for help due to stigma associated to mental health, (II) lack of knowledge of specialist services and (III) because clinicians who do not acknowledge their experiences are unable to adequately address their needs ( 59 ). Digital health technologies have the potential to improve these barriers by offering young people innovative and flexible platforms to share their experiences and feel supported, bringing new ways to work with clinicians and researchers, allowing for a more precise assessment and enhancing positive change of the person’s daily performance. From the descriptive results of this literature review, we can say that the development and application of digital health interventions in early psychosis are still in their infancy. Results deriving from the reviewed studies showed that it is feasible to use digital technologies to deliver psychological interventions in early psychosis, with participants expressing high levels of acceptability and willingness to use them to support their progress and recovery. However, future research should explore the implementation of these technologies with larger samples and controlled designs.
The enthusiasm for technology of young people is undeniable, with data generated by independent survey companies highlighting that around 97% of youth are connecting to internet daily ( 60 ) or that around two-thirds of young adults ( 18 - 34 ) own smartphones, being also the group more likely to use social media (e.g., Facebook) ( 61 ). Most of the interventions described in the present review have included service users in the design and development of the interventions, either in the form of focus groups or live experiences advisory panels. Taking into account the rapid evolution of the technology and the growing expertise between young people on their usage, this seems to be a crucial step to ensure that the technology will include the right functionalities and delivery options, which will potentially enhance user engagement. The views of clinicians and other mental health professionals involved in the recovery process of the young people with psychosis must also be taken into account when designing these tools. These professionals should also have protected time to be trained on digital technologies, to ensure their implementation in routine care practices.
Considering the global effort on stablishing early intervention services, integrating the clinical staging framework and coordinating speciality care programmes for young people at early stages of psychosis ( 7 ), it is clear that both research and clinical communities must continue working together on the design and adaptation of digital technologies that can improve access to psychological support, service users’ engagement and enhancement of treatment outcomes.
Acknowledgments
The authors would like to thank all the researchers that provided updated information on the status of their research and shared unpublished material.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Conflicts of Interest: The authors have no conflicts of interest to declare.
- Vol 6 (January 2020) /
- Are we there yet ?!—a literature review of recent digital technology advances for the treatment of early psychosis
Are we there yet?! —a literature review of recent digital technology advances for the treatment of early psychosis
Mar Rus-Calafell 1,2 , Silvia Schneider 1
1 Clinical Child and Adolescent Psychology, Ruhr-Universität Bochum, Bochum , Germany ; 2 Department of Psychiatry, University of Oxford, Warneford Hospital , Oxford , UK
Contributions: (I) Conception and design: All authors; (II) Administrative support: None; (III) Provision of study material or patients: None; (IV) Collection and assembly of data: All authors; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.
Abstract: Access to psychological interventions during early stages of psychosis is essential for ameliorating outcomes and improving prognosis. However, reaching and engaging individuals at these stages of the illness can be very challenging for early intervention teams. Recent digital technological advances have emerged to overcome some of these challenges and to improve access to psychological interventions. The aim of the present literature review is to summarise main findings of relevant studies published during the last 10 years on the utilization of digital technologies (i.e., virtual reality, smartphone technology and web-based interventions) to enhance psychological treatment outcomes in early psychosis. A literature search from January 2009 to June 2019 was performed to identify relevant papers. Of 1,502 studies identified, nine met inclusion criteria for the review and only five presented results from finalised trials. Overall, these studies showed positive feasibility and acceptability results, along with preliminary evidence of improved therapy outcomes. The present review offers a state-of-the-art summary of the main features of these user-centered digital interventions for early stages of psychosis and a critical discussion about their future implementation in mental health services.
Keywords: Early psychosis; mHealth; mobile app; virtual reality; online; digital intervention
Received: 02 September 2019; Accepted: 16 September 2019; Published: 05 January 2020.
doi: 10.21037/mhealth.2019.09.14
Introduction
Psychosis refers to a group of mental health conditions that affect a person’s thoughts, feelings and behavior and it is mainly characterised by hallucinations, delusions, thought disorder, negative symptoms and bizarre behaviour. It is considered one of the most impairing mental health disorders where for a significant portion of the course of the illness, the individual’s social and occupational functioning is markedly below the level achieved prior to the onset. The pre-psychosis period is the time interval between the first noticeable changes in behaviour, to the appearance of overt psychotic symptoms of diagnosable psychosis (also named full-blown psychosis) and it is called “clinical high risk” (CHR) ( 1 ). At this stage, many have already experienced a loss of cognitive and psychosocial functioning ( 2 ). The prodromal state period, which on average can last days up to 5 years ( 3 ), is a precious time to initiate treatment towards better prognosis as research has shown that reducing the duration of untreated psychosis (DUP) equipoised the effect of earlier disorder onset as a poor prognosis factor ( 4 ). Following the clinical staging model proposed by McGorry and colleagues [2006], where CHR encompasses stage I (subdivided into three sub-stages ‘a’ to ‘c’), after CHR comes stage II or full threshold first-episode of psychosis (FEP). It is considered the first acute phase or crisis, characterised by florid psychotic symptoms [sustained symptoms lasting four weeks or more as suggested by the NICE Quality standard 102 ( 5 )], and it is often detected by primary care physicians, emergency departments, welfare agencies, specialist care agencies, or drug and alcohol services ( 6 ). Early interventions during stage II have also been shown to improve the outcome of FEP through DUP reduction, improvement of treatment response, well-being and social functioning as well as secondary prevention of illness progression [stage III, ( 7 )]. Therefore, early detection and initial treatment strategy of CHR of psychosis and FEP has become a major goal of mental health services in order to delay the onset of full-blown psychosis, reducing unnecessary suffering and increasing the possibility of improved long-term outcomes ( 8 ). Early intervention for psychosis services (EIS), focusing on the special needs of young people and their families, are being implemented worldwide aiming to offer psychological and pharmacological interventions. Although preventive treatment altering the course of the illness (i.e., at CHR stage) and specialised comprehensive interventions for FEP can significantly improve disorder outcomes and their implementation is recommended ( 7 ), there are still some challenges to overcome. Main challenges include reaching individuals not accessing mental health services in order to improve detection of at-risk cases, optimising interventions and adapting them to young people new forms of communication, increasing the focus on social recovery instead of only ameliorating positive symptoms, or achieving long-term outcomes.
Digital technologies offer new opportunities for improving psychological interventions in an engaging and tailored way, as well as providing novel therapeutic contexts within which core psychological processes can be targeted in real time with immediate feedback. They can be more attractive and compelling to young people, offering them new forms of social interactions (e.g., on-line forums), flexible ways to access information and facilitating self-management (e.g., mobile apps and digital diaries) and delivering ecological valid treatments (e.g., exposure-based interventions using social virtual environments). One of the more promising technologies is virtual reality (VR). VR can be defined as technology that integrates real-time computer graphics, sounds and other sensory input to create a computer-generated world with which the user can interact ( 9 ). The ecological validity of this approach is strengthened by the sense of presence (the psychological sensation of “being there”) that individuals can experience in virtual environments ( 10 ). A key advantage of VR is that it offers researchers and clinicians the possibility not only of observing the user’s real-time behaviour when interacting with virtual agents, but also of controlling and modifying the environment and the responses of the avatars or simulated stimuli and tasks ( 11 ). The use of VR and avatars in the assessment and treatment of several dimensions of psychotic symptoms is promising ( 12 ), although research is limited to adult populations.
There is also a growing body of work and research exploring the potential of smartphone technologies to enhance therapy outcomes, improve medication adherence, and to promote self-management for people with psychosis. Mobile software applications (“apps”), sometimes combined with wearable devices (wrist band, watch or clothes connected to the phone gathering physiological information for extended periods), are the most common form of smartphone technology, also known as mHealth (or mobile Health). Smartphone technology has the potential to significantly improve mental healthcare, through extending the reach of services and providing adjunctive support to existing psychosocial interventions ( 13 ). A recent meta-analysis showed that more than 65% of people with psychosis own a smartphone, with an increase up to the 81% in the last decade, and that the majority of users are in favour of using mobile phones (>60%) to track or monitor their mental health ( 13 ). Mobile apps are providing a new form of the classic structured diary techniques in the form of momentary assessments, such as the Experience Sampling Method (ESM) ( 14 ) or Ecological Momentary Assessment (EMA) ( 15 ), defined as naturalistic methods to distribute surveys that individuals complete in the context of everyday life. Additionally, these methods have the advantage that the information is collected digitally and in real-time, using the person’s own device, and can be shared with the authorised clinician’s web-based dashboard ( 16 ). These forms of assessment can contribute to identifying the person’s individual risk factors or symptom patterns and identify treatment goals ( 17 , 18 ). Feedback on change in real time may then facilitate behavioural changes and improve therapy generalisation into the person’s daily life.
The utilization of the internet as a source of information and support for people with psychosis and their relatives has also grown considerably ( 19 ), with the potential to significantly influence health related behaviors and decisions as well as the clinician-patient relationship ( 20 ). People with psychosis use the Internet and are able and willing to use mental health services on-line (e.g., peer-to-peer support) ( 21 ). The internet provides a great opportunity to deliver cost-effective and highly accessible interventions, independent of time and place at a self-determined pace. Results from a systematic review conducted by Alvarez-Jimenez and colleagues [2014] supported the acceptability and feasibility of internet-based interventions, with several studies providing encouraging preliminary results regarding their clinical and psychosocial potential ( 22 ).
Digital technology has the potential for radical change in terms of service delivery and development of new treatments ( 23 ) and health care providers around the world are adopting and adapting digital solutions to improve current challenges, such as long waiting times to access interventions and enhancement of existing therapies’ outcomes. The aim of the present literature review is to summarise main findings of relevant studies published during the last 10 years on the utilization of digital technologies (i.e., virtual reality, smartphone technology and web-based interventions) to enhance psychological treatment outcomes in early psychosis.
Search criteria
The database used to conduct the search was PubMed. Studies for review were identified following a keyword search for the terms ‘virtual reality’ OR ‘VR’ OR ‘smartphone’ OR ‘mobile-app’ OR ‘Internet-based’ OR ‘Web-based’ AND ‘clinical high risk for psychosis’, OR ‘ultra high risk for psychosis’ OR ‘first episode of psychosis’, OR ‘early psychosis’, OR ‘early intervention services’, from January 2009 to the 7th of June 2019.
Study selection
For the purpose of this review, three forms of digital technologies were selected: VR, mobile and internet-based interventions. Based on Rus-Calafell et al. [2017], VR based interventions were defined as interventions using immersive and interactive VR environments in three-dimensional (3D) graphics presented with a head-mounted display, or that they used 2D graphics on a computer screen but were interactive, meaning that participants could navigate through the environment using either a joystick or mouse/keyboard and where they would find sufficient elements in to interact with and had some feedback from (as a response of the interaction). Following Alvarez-Jimenez et al. [2014], internet-based interventions were defined as web-based interventions enabling peer-to-peer contact, patient-to-expert communication or interactive psycho-education/therapy; mobile-based interventions were defined as interventions delivered via mobile phones using SMS, MSS, mobile or web-applications.
Considered for inclusions were studies examining the usability, feasibility, acceptability or efficacy of user-centered, VR, smartphone or Internet-based psychological interventions, including participants meeting CHR for psychosis criteria, FEP criteria and/or interventions directed exclusively to individuals registered with early intervention for psychosis services (EIS).
Studies were included in the review if they: were written in English; contained original empirical findings, and were published in a peer-reviewed journal. In case of protocols’ publications, they were included only if trial outcomes were not yet published or if they differed considerably from previous pilot work from the same group. Studies were excluded from the review if they were assessment or observational studies; family-centered interventions; symptom monitoring not part of a psychological intervention or without personalized advice; reviews; not available in English; letters to editors; theses; or book chapters.
Research findings
The initial screening (title and abstract) of 1,502 papers resulted in 28 articles being selected for in-depth evaluation. Majority of papers not selected for in-depth evaluation discussed cross-sectional results of different demographic and clinical factors associated with early psychosis, longitudinal assessment and transition to psychosis and implementation of early intervention services in different countries. Finally, nine articles were included in the present literature review. Figure 1 illustrates the articles selection process.
Smartphone technology-based interventions
A total of 7 studies exploring the feasibility, acceptability and effectiveness of mobile apps for smartphone to deliver psychological interventions in early psychosis were identified. Table 1 summarises the characteristics of these studies. From these seven studies, only 3 presented actual results of a completed trial ( 24 - 26 ), being only one of these three a single-blind randomised controlled study ( 24 ). Results of the three studies confirmed feasibility and acceptability of using mobile-based interventions in early psychosis, including also preliminary evidence for improvement of therapy targets, such as loneliness ( 25 ), negative symptoms, general psychotic symptoms and mood ( 24 ). Similarly, Lim et al. [2015] and Bucci et al. [2018] included a one training session at the beginning of the intervention to introduce and guide participants on the use of the app domains, contacted the participants by phone once a week, and in both cases engagement with the apps was monetarily incentivized. The two tested interventions are based on different cognitive approaches: positive psychology and cognitive-behavioural model. The App +Connect ( 25 ) includes 16 modules based on key concepts of positive psychology (e.g., positive emotions, three good things, gratitude, kindness), with their corresponding tasks and multi-media resources (i.e., shared videos using young people with lived experiences, expert videos featuring therapists or actor videos addressing questions related to interpersonal relationships), that the participants can complete within at least 31 days [see supplementary online resources in ( 25 )]. The Actissist app ( 27 ) consists of two main parts: first part, which can be either followed by a prompt from the phone or self-initiated, focus on self-assessment through question answer exchanges on cognitive appraisals, belief conviction, emotions and associated behaviours about suspicious thoughts, voices, getting out, feeling criticised or cannabis consumption. Second part consists of supplementary content with several multi-media options that act in stand-alone fashion design to complement and support the feedback from the intervention. In contrast, Kim and colleagues [2018] included HYM as a continuation phase after completion of a group-Cognitive Behavioural Therapy for psychosis (CBTp) and their app allowed personal communication, real time personal advice and support from clinicians to participants, which also resulted in better case-management ( 26 ).
The rest of studies describe trial protocols, meaning trial results are not reported at this stage. The study by Traber-Walker and colleagues in Switzerland is the only one focusing on individuals at CHR for psychosis ( 28 ). Their intervention, Robin, will combine 16 face-to-face sessions with a therapist and a smartphone app that allows integrating contents of the therapy sessions (e.g., goals and specific coping strategies). The intervention follows CBTp and systemic approaches ( 28 ). The other smartphone-based intervention following a specific clinical stage framework is proposed by Barbeito et al. [2019] in Spain, focusing on adolescents at FEP stage who will be randomised either to an experimental intervention or treatment as usual condition ( 29 ). Those allocated to the experimental condition will have access to an app in addition to treatment as usual. The ThinkApp contains five modules: psychoeducation, recognition of symptoms and relapse prevention, problem-solving techniques, mindfulness and “contact wall” (similar to a forum or social space where users can share interests and experiences supervised by a therapist/moderator).
My journey 3 is the smartphone app designed by Steare and colleagues and it will be tested in a feasibility randomised trial including six EIS for psychosis in North London ( 30 ). Those allocated to the experimental intervention will receive one training session on the app and will be allowed to use it for a period of 12 months. The version of the app used in this study includes structured intervention components based on recovery and relapse prevention interventions. Although the number of contacts with clinicians is not controlled in the study, clinicians will be encouraged by the research team to discuss with participants recovery goals and relapse prevention plans in routine appointments and check on app usage. Similarly, Husain and colleagues will test the feasibility of the TechCare app with 12 service userd from the EIS for psychosis in Lancashire ( 31 ). The app is based on seminal work by Kingdon & Turkington on CBTp ( 32 ) in combination with participant tailored intelligent real-time therapy (iRTT): an intelligent machine learning algorithm which provides techniques in real time based on breach of assessment thresholds and recommendations on the most popular self-help interventions included in the app (e.g., thought-feeling-behaviour relationships, stress models, techniques for managing mood and goal setting).
Internet-based interventions
Two studies discussing the design, implementation and effectiveness of on-line psychological therapy for CHR and FEP individuals were identified in the literature search ( 33 , 34 ). Both interventions have been designed by the same research group in Australia and they focus on the enhancement of the person’s social functioning and social connectedness, as well as too sustain benefits of early intervention beyond discharge from specialist FEP services ( 33 ). These two on-line systems, HORYZONS and MOMENTUM, adopt a “ Moderate On - line Social Therapy ” (MOST) ( 35 ) conceptual model which integrates: (I) peer-to-peer on-line social networking; (II) individually tailored interactive psychosocial interventions; and (III) involvement of expert mental health and peer moderators to ensure the safety of the intervention. However, the content of the interventions differs as they target different groups.
HORYZONS includes a first stage where the person is guided through psychoeducation models based on previous work of this group and targeting risk factors for psychosis relapse and salient domains in the early recover process ( 33 ). Another essential part of the system is ‘the café’ where users and moderators can post comments, information, upload files and ‘like’ different content. An information wall, which includes activity of individual users, homepage, a ‘job zone’ and other moderated social networking features are other components of the system. This online intervention adopts a positive psychology approach ( 36 ) where the users are guided and encouraged to identify, discuss and exercise key personal strengths within the online environment and in real-life to enhance self-esteem, foster social functioning ( 37 ) and reduce depression. The results of the pilot study were very encouraging, showing that the online system was feasible, engaging and say and showed preliminary positive effects on social connectedness and empowerment in young people with FEP.
MOMENTUM focus on promoting a circular relationship between wellbeing and functioning: by improving self-efficacy, social support, and subjective wellbeing there will be a reciprocal effect on each other that will motivate the young person to initiate and persist in social activities and improve overall social functioning ( 34 ). The interactive therapy modules (or ‘steps’) specifically address: (I) personal strengths, (II) mindfulness and (III) connecting through others. It also includes a moderated online social network (the café) to foster social support and a group problem solving function designed to promote self-efficacy and interpersonal problem solving (‘Talk it Out’). The system allows two type of moderation: expert and peer moderators. Results have shown that MOMENTUM is an engaging and safe on-line system for individuals at CHR for psychosis. Furthermore, results at follow-up have shown significant positive effects on social functioning that have been associated to changes in therapeutic targets such as strengths use, mindfulness skills and social support.
Virtual reality-based interventions
Although the search retrieved some original articles on the utilisation of VR in early psychosis, none of the articles met the inclusion criteria of the present review.
Discussion and clinical implications
To our knowledge, this is the first literature review focusing on psychological interventions using digital technology to treat people within the early clinical stages of psychosis.
Based on the results of the present literature review, the technology that has been wider used and applied to improve psychological treatments in early psychosis is mobile-based interventions, either on the form of blended therapy combining face-to-face therapy with mobile app or as tradition face-to-face therapy delivered and operationalised through smartphones apps. The majority of the studies exploring mobile-based interventions in early psychosis up to this date are protocol studies and feasibility studies with small samples, being the study conducted by Bucci et al. [2018] the only controlled randomised trial. This could be explained by the fact that RCT (considered the gold standard for efficacy testing) are very time-consuming and often do not allow the technology to be changed on the course of the study. This can have a detrimental effect on digital technologies as they require for constant updating and maintaining and can be quickly obsolete. All of the studies included in the present review used different mobile apps that have been design to target psychological mechanisms that may contribute to the onset or maintenance of psychotic symptoms, based on traditional CBT or third wave CBT approaches [described as new developments in CBT which emphasise the relevance of acceptance, mindfulness and emotions, the relationship, values, goals, and meta‐cognition ( 38 )] and in the context of a psychological intervention. The literature search also retrieved some studies in early psychosis using mobile-based technology that can assist other forms of mental health support, such as symptom monitoring or medication adherence, not necessarily in the context of a theory-driven protocol-based psychological intervention ( 39 - 41 ). However, the study of the effects and mechanisms of change of mobile-based technology in the form of continuous monitoring of symptoms outside a treatment model deserve further attention in the research community ( 42 ). A step forward on smartphone apps for psychosis is the one proposed by Cella and colleagues, where they combine a self-assessment mobile phone app and a wrist worn device which continuously record heart rate variability (HRV) and electrodermal activity (EDA) in people with FEP, with the purpose of identifying relapse bio-signatures that can inform refined early interventions for psychosis ( 43 ). Finally, it is essential to highlight that all the studies testing smartphone-based interventions reviewed include acceptability and safety measures, with positive findings on those reporting study results. This is particularly interesting, as further research on users’ views have shown that data protection and safety is one of the major concerns of early psychosis service users ( 44 ), who also expressed that endorsement of the technology by a valid institution (e.g., university or health service) would serve them as a guarantee and would increase digital interventions uptake.
As stated before, the two identified psychological online intervention for early psychosis have been designed by the same clinical and research group at the E-Health division of Orygen, the National Centre of Excellence in Youth Mental Health in Australia. These pioneer interventions use social media platforms that put together psychoeducational therapy units with a forum-like feature that allows users to talk about their personal problems and find peer-support. HORYZONS and MOMENTUM are tailored to FEP and CHR therapy targets and have been proven feasible, acceptable and engaging. Although they have only been tested in small feasibility studies, results are very encouraging and the MOST technology is also being implemented to support young people recovering from depression and carers of young people with mental health issues. Further developments of this technology could even incorporate advanced computational and artificial intelligence methods, such as chatbots (a computer programme that mimics conversation with users via a chat interface, either text or voice based) or individualised therapy suggestions based on linguistic analysis of newsfeed postings ( 35 ). The Australian group has recently published the protocol of the randomised controlled trial of HORYZONS ( 45 ), which includes 170 people with FEP, and the results of this study are expected by the end of 2019 or beginning of 2020. In terms of other online tools to support detection and intervention for early psychosis, the literature search retrieved two studies describing online platforms for the screening of early signs of psychosis and detection of CHR ( 46 ) and to monitor conversion to full-blown psychosis ( 47 ).
Based on our literature search, there is a clear lack of studies exploring the potential of VR-based interventions for early psychosis. Nonetheless, the search retrieved four studies using VR to assess different psychological processes associated to paranoid ideation in people at CHR for psychosis conducted by the research team lead by Dr. Lucia Valmaggia at the Institute of Psychiatry, Psychology and Neuroscience VR Lab ( 48 - 51 ). This group has also developed a virtual school canteen environment that aims to assess early signs of psychosis in young adolescents, which is currently been tested in a school-based sample (Gayer-Anderson et al. , in preparation). It is important to point out that relevant clinical trials using VR technology to treat psychosis are including or have included participants being referred from EIS ( 52 , 53 ). These studies are using VR environments as a mean to expose people with psychosis to feared situations with the objective to drop defence behaviours and relearning safety, and test harm expectations. Crucially VR environments also allow ‘embodied’ cognitive processes to be targeted ‘in action’, such as in AVATAR therapy ( 54 , 55 ), with the ultimate aim that improvements made in VR environments will generalise to real-life contexts. Different forms of VR involving other users and or social processes, such as collaborative virtual environments or self-embodiment paradigms, could also help to improve social functioning in early psychosis.
Finally, it is important to stress the limitations of the present literature review. Firstly, only one database has been used to do the search of studies relevant to the main topic of this review. Nonetheless, based on the purpose of providing a general summary or overview of the selected topic and considering the scope of the selected database, the procedure followed is valid to generate qualitative data to provide a state-of-the-art overview. Secondly, the present review does not include a formal assessment of the quality of the studies reviewed. Ultimately, the definition of “early psychosis” has been formulated based to the clinical staged model proposed by McGorry and colleagues ( 6 ) instead of on traditional categories of psychosis. This model can be defined as a refined form of diagnosis with the advantages of taking into account the extent of progression of the condition at a particular point in time, where a person lies along the continuum of the course of illness ( 56 ), and guiding treatment selection ( 57 ).
Future research: Are we there yet?!
Young people often fail to engage adequately with services preventing them from obtaining long-term benefits from treatment ( 58 ). Main reasons for this issue are (I) young people do not reach out for help due to stigma associated to mental health, (II) lack of knowledge of specialist services and (III) because clinicians who do not acknowledge their experiences are unable to adequately address their needs ( 59 ). Digital health technologies have the potential to improve these barriers by offering young people innovative and flexible platforms to share their experiences and feel supported, bringing new ways to work with clinicians and researchers, allowing for a more precise assessment and enhancing positive change of the person’s daily performance. From the descriptive results of this literature review, we can say that the development and application of digital health interventions in early psychosis are still in their infancy. Results deriving from the reviewed studies showed that it is feasible to use digital technologies to deliver psychological interventions in early psychosis, with participants expressing high levels of acceptability and willingness to use them to support their progress and recovery. However, future research should explore the implementation of these technologies with larger samples and controlled designs.
The enthusiasm for technology of young people is undeniable, with data generated by independent survey companies highlighting that around 97% of youth are connecting to internet daily ( 60 ) or that around two-thirds of young adults ( 18 - 34 ) own smartphones, being also the group more likely to use social media (e.g., Facebook) ( 61 ). Most of the interventions described in the present review have included service users in the design and development of the interventions, either in the form of focus groups or live experiences advisory panels. Taking into account the rapid evolution of the technology and the growing expertise between young people on their usage, this seems to be a crucial step to ensure that the technology will include the right functionalities and delivery options, which will potentially enhance user engagement. The views of clinicians and other mental health professionals involved in the recovery process of the young people with psychosis must also be taken into account when designing these tools. These professionals should also have protected time to be trained on digital technologies, to ensure their implementation in routine care practices.
Considering the global effort on stablishing early intervention services, integrating the clinical staging framework and coordinating speciality care programmes for young people at early stages of psychosis ( 7 ), it is clear that both research and clinical communities must continue working together on the design and adaptation of digital technologies that can improve access to psychological support, service users’ engagement and enhancement of treatment outcomes.
Acknowledgments
The authors would like to thank all the researchers that provided updated information on the status of their research and shared unpublished material.
Conflicts of Interest: The authors have no conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
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Psychopathology
Systematic review, the lived experience of first-episode psychosis: a systematic review and metasynthesis of qualitative studies.
Author affiliations a ESMPI, Groupe MGEN, Paris, France b ECSTRA Team, UMR-1153, Inserm, Université de Paris, Paris, France c Service Universitaire de Psychiatrie de l’Adolescent, Argenteuil Hospital Centre, Argenteuil, France d Service de Psychologie et Psychiatrie de Liaison et d’Urgences, Hôpital Européen Georges Pompidou AP-HP, Hôpitaux Universitaires Paris Ouest, Paris, France
Jordan Sibeoni
SUPADO, CH Argenteuil
69 Rue du LtC Prud’hon
FR–95100 Argenteuil (France)
[email protected]
Keywords: First-episode psychosis Qualitative research Lived experience Patient-centered approach
Related Articles for " "
Both research and care have focused on first episodes of psychosis (FEPs) as a way to address the issue of early stages of schizophrenia and to reduce the duration of untreated psychosis. The objective of this study was to explore specifically the lived experience of FEP from the point of view of patients and their families by applying a metasynthetic approach, including a systematic review of the literature and analyses of qualitative studies on the subject. This metasynthesis follows thematic synthesis procedures. Four databases were systematically searched for qualitative studies reporting FEP from the patient or family’s perspective. Article quality was assessed with the Critical Appraisal Skills Program. Thematic analysis was used to identify key themes and synthesize them. Thirty-eight articles were included, covering data from 554 participants (378 patients and 176 relatives). Three themes emerged from the analyses: (1) When and how does a FEP start? (2) What are its negative and positive aspects? (3) How do patients and families recount FEPs? Our results found important discrepancies between the experiences of patients and those of their families, especially regarding positive aspects. In light of the confusion reported by patients and notable in our results, we also discuss the gap between the name, FEP, and the lived experience of patients and family members in order to explore its practical implications.
© 2020 S. Karger AG, Basel
Introduction
Interest in the prodromal and early stages of schizophrenia has grown in recent years, in both clinical practice and research. The primary focus is on reducing the duration of untreated psychosis and improving disease prognosis [ 1 ]. In this context, both research and care have focused specifically in recent years on first episodes of psychosis (FEPs).
These episodes have thus been the object of numerous studies: epidemiologic [ 1 ], with an incidence estimated at 33.3 per 100,000 per year [ 2 ]; biological, for example, blood cortisol levels [ 3 ] and biomarkers [ 4 ]; morphological [ 5 ], concerning especially the hippocampus [ 6 ]; and genetic [ 7 ] with, in particular, correlations between the polygenic risk score and clinical or prognostic aspects of the FEP [ 8 , 9 ].
The social, clinical, and neurocognitive characteristics have also been examined in detail [ 10 , 11 ], especially to explore the factors predictive of treatment resistance during FEPs, including negative symptoms, comorbid substance use, and “lower premorbid functioning” [ 12 ].
Numerous clinical trials [ 13 - 15 ] have tested treatments (pharmaceutical treatment, psychotherapy, physical activity) for FEP, as well as departments or clinics specifically for FEP or early intervention programs. The latter have demonstrated their superiority over standard treatment in terms of effectiveness of care [ 16 ] and reduction of mortality [ 2 , 17 ].
To a lesser extent, FEPs have also been the object of qualitative studies examining how patients and their families and friends recount and understand this experience. Conducting qualitative research is becoming essential in psychiatry in general and among patients experiencing FEP in particular. The past decade in psychiatry has been characterized by movement from a doctor-centered to a patient-centered approach to treatment outcomes, illustrated by the development of the recovery model [ 18 , 19 ], patients’ empowerment [ 20 ], shared decision-making [ 21 ], and more globally patient and public involvement [ 22 ] in the field. Nowadays, psychiatrists must try to see each patient’s mental illness through the eyes of the patient and the family in order to integrate patients’ preferences, choices, and needs into the decision-making process. This shift in the patient’s role in care requires psychiatry to move beyond its traditional biomedical model and paternalistic approach, to take the patient’s subjectivity into account, and to place the patient’s lived experience at the center of the care process. Qualitative methods fit this societal evolution in psychiatry well, aiming as they do to describe and capture the lived experience in great depth. They are especially useful in the context of FEP, which is often the first encounter with psychiatry and the beginning of a – potentially long – therapeutic journey. Their analysis can produce concrete ideas directly based on patients’ lived experience that can improve patients’ adherence to care and their therapeutic alliances [ 21 ].
Because qualitative studies are usually conducted with small samples and in specific contexts, there may often be concerns about the generalizability of their results. The WHO has recently affirmed the importance of synthesizing data from qualitative studies to help in the development of health policies and clinical practices [ 23 ]. Metasynthesis is a method that not only synthesizes the existing data but also analyzes them transversally to produce new knowledge [ 24 , 25 ]. This method is ideal for reaching wider audiences, for it makes qualitative research more accessible and generates hypotheses that can be tested. It can also enable qualitative research to influence guidelines and inform health policies. This was the case for instance for the NICE guidelines for asthma [ 26 ] and diabetes in pregnancy [ 27 ].
We have found 3 systematic reviews of qualitative studies concerning FEPs. The descriptive review by Boydell et al. [ 28 ] of 31 articles (reporting 27 studies) included the perspectives of patients, families, and healthcare professionals; it simultaneously examined studies exploring the prodromal phase. Their results focused on “the complex social processes of achieving identity, acquiring perspectives, doing activity and developing relationships as experienced by young people who have experienced psychosis and their significant others.” They emphasized the central role of social relations during the prodromal phase, directly associated with a high degree of distress and functional disability, and argued for further qualitative research to explore the intersubjective, social, and cultural aspects of early psychosis programs. Griffiths et al. [ 29 ] conducted a metasynthesis focused on distress during the FEP. They analyzed 33 studies considering only patients’ perspectives and distinguished 2 forms of distress: intrapersonal and interpersonal. The sources of distress were multiple and substantially different from those routinely recognized and targeted in clinical practice. This led the authors to highlight the importance of being service user-led when delivering mental healthcare. Jordan et al. [ 30 ] systematically reviewed the literature on the positive changes experienced after a FEP. This review included 40 articles, 37 of them qualitative studies, and found numerous positive aspects reported by patients and their families and close friends: individual, relational, and spiritual. At the individual level, they found that patients experienced changes in lifestyle and personality (e.g., more insight and more clarity). At the relational level, FEP led to improved, closer family bonds. FEP also changed service users’ and family members’ sense of their role in society, for example, by becoming willing to engage in peer-support actions. At the spiritual level, the few studies addressing this aspect found that prayer or attending religious services were helpful in facilitating positive change.
These reviews either focus on specific aspects or cover other experiences. To our knowledge, no review of qualitative studies has specifically explored the lived experience of individuals with an FEP from their own points of view of and those of their families.
Our objective was to fill this gap by applying a metasynthetic approach to synthesize the qualitative literature on the subject to generate new insights into FEPs that can better inform future health policies.
Study Design
This metasynthesis relies on our 6-stage approach inspired by the model of meta-ethnography and the procedures of thematic synthesis [ 25 ]. It follows the ENTREQ reporting guidelines. Our research group has already used this approach in other studies [ 31 - 32 ].
Our approach comprised 6 successive stages:
Defining the research question, the subjects, and the types of studies to be included
Identifying and selecting the studies
Assessing the quality of the studies selected
Analyzing the studies, identifying their themes, and translating these themes across each study
Generating the themes of the analysis and structuring the synthesis
Writing the synthesis.
The thematic analysis contains 2 phases: one descriptive, which defines and compares the themes, and the other interpretive; it develops original ideas drawn from the review.
Search Strategy and Selection Criteria
We conducted a systematic search in 4 databases according to a search algorithm specific to each base: Medline, PsycINFO, EMBASE, and SSCI through May 2019.
Preliminary research identified several articles from which we selected key words. The research group used existing literature reviews to determine a list of key words, a mix of free-text terms and thesaurus terms, referring to FEP and qualitative research, to collect studies indexed in the databases. Our search strategy is detailed in Table 1 .
Search strategy for each database
Studies met the inclusion criteria if they were qualitative articles about FEP from the perspective of patients or their family members, published in peer-reviewed journals, in either English or French. The exclusion criteria rejected quantitative or mixed studies, reviews, commentaries, editorials, dissertations and theses, and non-peer-reviewed journal articles. Articles dealing specifically with the experience of care for FEP were excluded from this review because we plan to conduct another metasynthesis of that specific topic. We discussed potential articles at meetings of our research group, composed of specialists in qualitative research and psychiatrists (who treat children, adolescents, and adults).
Extensive lateral searches – systematic checking of reference lists, hand searching of key journals and the PubMed sidebar of related articles – also sought to identify papers that might have eluded our algorithms. Three authors (A.N., J.S., and I.O.) independently screened the papers retrieved, initially by title, then by abstract, and finally by full text.
After collecting the references and eliminating duplicates, 3 authors (A.N., L.V., and J.S.) subsequently read the titles and abstracts to assess their relevance to our topic and methodology. The database indexing of qualitative studies was rather poor, and most of the references collected turned out to be quantitative studies. They were eliminated at this step.
The potentially relevant articles were then read in full, and a second selection kept only the articles that met our inclusion criteria. Disagreements were resolved during group meetings. The agreement level at these meetings was high. In fact, there were no disagreements regarding either participants or methods. We included only studies with a qualitative design, that is, based on a well-known qualitative methodology (phenomenology, grounded theory, thematic analysis, etc.), using specific data collection tools (individual or group interviews, observation, written documents), and a qualitative analysis approach, as shown by the presentation of the results (i.e., thematic organization). Disagreements initially occurred regarding the topic, as we had planned to include all studies related to the experience of FEP without requiring that it necessarily be the principal object of the study. To better operationalize this criterion and avoid further disagreements, we decided to include an article if at least one paragraph of the results concerned the lived experience of FEP.
Assessment of Article Quality
We assessed the quality of included articles with the Critical Appraisal Skills Program (CASP) [ 33 ], a 10-item tool with 2 screening questions about the research aims and appropriate use of a qualitative methodology and 8 questions covering research design, sampling strategy, data collection, researcher’s reflexivity, ethical issues, data analysis, the findings, and the value of the research. It has 3 possible responses for each question: yes (2 points), partially (1 point), and no (0 points). The maximum score for each article is thus 20. Two authors (J.S. and A.N.) performed this assessment independently and then discussed the results within the research group until they reached agreement. Given the lack of consensus about the role and function of study quality assessment as part of systematic reviews, we did not exclude any study from the analysis based on our evaluation. The quality of the studies was high: the lowest score was 14/20, and 80% of the studies (31 studies) received a score of 17/20 or higher. Table 2 details the contribution of the studies to each theme. It shows that none of our results relied only on lower-quality studies.
Studies’ contribution for each theme
Data Analysis
Our analysis began with an attentive reading and then repeated readings of the titles, abstracts, and texts of each article. Three researchers (A.N., I.O., and E.M.) extracted the formal characteristics of the studies, and 3 (A.N., J.S., and A.R.-L.) independently extracted and analyzed the first-order results (i.e., the study results) and the second-order results (authors’ interpretations and discussions of the results) in the form of a summary for each study selected; these independent analyses were then compared and discussed at the research meetings.
Thematic analysis followed the 5-stage approach (Table 3 ) and enabled us to develop themes inductively from our study data. The work of translation involved comparing and assembling the themes obtained by the analysis of each article to retain the key themes that capture similar ideas in the different articles and then to develop overarching concepts about the research question. The high level of rigor of the results was obtained by triangulation of both the data sources and the analyses: 3 independent analyses and monthly research meetings to discuss the results. NVivo 12 software was used to manage data, facilitate the development of themes, and verify the researchers’ contributions to the findings.
Process of thematic analysis
Reflexivity
Addressing reflexivity issues was made possible by working together as a group. Members of our research group each brought a particular angle to the discussions. The first author is a junior psychiatrist working in an adult psychiatry department; the last 2 authors are senior psychiatrists, one a professor of child and adolescent psychiatry, and the other a child and adolescent psychiatrist specialized in adolescent psychiatry. Within the research group, the first author voiced more concerns about the future life and possibilities of the patient after a FEP, whereas the last 2 authors were more focused on how this adverse experience directly impacts the youth’s development. To avoid being confined to the sole perspectives of psychiatrists, we asked a psychologist and a medical doctor who was not a psychiatrist to join the research group. The psychologist helped us develop a more global point of view that was not only medical and that also paid more attention to the experiences of family members. The medical doctor had more distance with the topic and a more theoretical approach that enabled the research group to discuss epistemological and nosographic aspects.
Presentation of the Studies
We collected 2,530 references, that is, 2,221 after eliminating duplicates. After a first evaluation based only on titles and summaries, we eliminated 2,044 references, then read the remaining 177 articles, and determined that 38 of them met our inclusion criteria, that is, 1.5% of the initial 2,530 articles (Fig. 1 ). This percentage is consistent with that reported by other metasyntheses [ 31 , 32 ].
PRISMA diagram depicting the flow of information through the different phases of the study selection.
The 38 studies included a total of 554 participants. In all, 378 patients were questioned and 176 family members. 1 Only 9 studies (or about one quarter) included, in part or only, hospitalized participants or their family and friends [ 34 - 41 ]. The other studies concerned only patients (or their families or close friends) who were managed as outpatients and were stabilized; an acute episode was an exclusion criterion in most studies.
Table 4 describes the studies’ principal characteristics.
Principal characteristics of the included studies
Quality Evaluation
The overall quality of the articles, assessed according to the CASP criteria, was good. All of the articles had a score of 14/20 or higher. The point most frequently absent from the authors’ methodology sections was reflexivity, that is, a critical examination of the role played by the authors through all stages of the research process. The absence of reflexivity can impede an understanding of the process by which the researchers develop the study and interpret their results. One potential explanation for the failure to mention it may be the editorial constraints of scientific journals, which limit the number of words or characters. Seven studies obtained a score of 20/20 [ 35 , 42 - 47 ]. Secondary analysis with the 10 studies with the lowest quality according to CASP did not change the results. Table 2 gives a list of which original studies contributed to which themes.
Thematic Analysis
Three themes emerged from the analyses: (1) When and how does a FEP start? (2) What are its negative and positive aspects? and (3) How do patients and families recount FEPs? Table 5 presents quotations from participants and from the authors of the primary studies for each theme. Figure 2 presents an overview of the results.
Quotations by participants and authors of the studies illustrating each theme
Overview of the results.
When and How Does a FEP Start?
A sudden beginning, a break.
For the families, their loved one’s FEP began abruptly. They reported a moment of crisis that instigated their help-seeking. The crisis was sometimes manifested by violent or dangerous behavior by the individual [ 38 , 45 ] or by immediately life-threatening suicidal behavior [ 34 , 36 , 38 , 45 , 48 ]. The families described exterior trigger phenomena, such as expulsion from school for behavioral problems [ 36 ].
The patients, on the other hand, did not describe a sudden start, but instead reported experiencing a break or rupture with their previous functioning:
The impression that they were no longer themselves [ 41 , 51 , 52 , 54 , 58 , 62 ]
The impression of being lost, confused [ 46 , 49 , 50 ], unreal, disconnected from themselves, from others, and from the world around them [ 51 , 52 ].
This break also involved an experience of loss and of grief:
A loss related to changes in their personality or in their abilities, induced by their experience with the disease [ 46 , 47 , 50 , 53 ]
Loss of confidence in themselves [ 51 , 53 ]
Loss of their previous physical appearance [ 51 - 53 ]
Mourning for a “normal” adolescence [ 44 ], for the feeling of being a “normal” person [ 50 ].
Family and close friends also reported this experience of grief and loss. Siblings in particular described their mourning for the relationship they had had with their brother or sister and for a “normal” adolescence. Parents linked acceptance of their child’s chronic disease with numerous successive painful renunciations, especially of the relationship they had established before the disease and the future they had imagined for their child [ 53 ].
Not a Beginning but a Continuation?
Families focused their narratives on the child’s preexisting difficulties. Parents described the child’s developmental difficulties, or even authentic disorders [ 37 , 55 ], with their histories of psychiatric care for learning disorders, tics, anxiety, language disorders, epilepsy, and so on. Most also noted their child’s early relationship difficulties [ 37 ].
The patients reported trauma before their FEPs, often repeated or prolonged, such as abuse (physical or emotional) or deaths [ 50 , 54 , 56 ]. They also described problems with relationships since childhood [ 39 , 42 , 50 , 56 ]:
With peers: They described experiences of harassment, rejection, hostility, or being mocked [ 39 ].
With their family: They reported conflictual relationships with their parents, abuse, and parental psychiatric diseases [ 39 , 50 , 56 ].
Finally, several patients recounted continuity between before and after the first psychotic episode. They noted that they did not feel different and that they had always had psychotic symptoms and concentration or mood disorders that were a problem in their daily lives [ 61 ].
What Are Its Negative and Positive Aspects?
A painful experience of distress.
Patients described their FEP as an experience of major distress and numerous negative emotions:
Fear [ 45 , 46 , 62 ]
Anxiety [ 41 ]
Sense of despair [ 51 , 62 ]
A feeling of shame and humiliation after the episode [ 46 , 57 , 58 ]
Sadness at the moment they became aware of the challenges presented by recovery [ 45 ]
Worry about their future [ 62 , 63 ], specifically fear that they would never again be happy [ 42 ] and concern about the social consequences of this episode (such as job loss or stigmatization) [ 51 , 52 ].
Finally, the patients reported a feeling of very intense distress induced by the psychotic symptoms [ 50 ], such as paranoia, hallucinations, and disorganization [ 51 ]. Auditory hallucinations with delusional commands or violent, threatening, or degrading comments generated substantial emotional distress [ 65 ].
The siblings reported experiencing the FEP as an intense shock induced by their inability to understand what was happening [ 40 ]. They described a feeling of shame, fear of embarrassing behavior by their sibling [ 64 ], and worry about the well-being of the youngest siblings and about their own mental health [ 40 ]. They also revealed a sense of ambivalence, between, on the one hand, the desire to help their sick brother or sister and their parents and, on the other hand, a feeling of jealousy due to how their parents’ attention was monopolized and to their desire to move ahead in their own lives [ 40 ]. Some siblings described guilt feeling about their inadequate empathy [ 64 ].
Parents described their dismay at their child’s symptoms before finding care [ 60 ], but also their shock at the child’s hospitalization, often on an emergency basis [ 37 , 62 ]. They talked about how their role as principal caregivers especially exposed them to emotional distress, sadness in particular, [ 36 , 61 , 62 ]. They described this role as a burden and talked about physical and psychological [ 60 , 61 ] exhaustion associated with feelings of anger, worry, and fear about their child’s aggressiveness toward them [ 36 , 60 , 61 ]. Finally, they described especially intense guilt feelings [ 48 , 60 ] as well as great worry about their child’s future [ 37 ].
A Positive Experience?
A minority of patients nonetheless reported experiencing the psychotic outbreak as positive, at least temporarily, because they felt more authentic than they had before [ 41 ]. Similarly, several patients experienced their auditory hallucinations positively, describing the voices as helpful, supportive, and protective [ 65 ].
Some patients seized the episode as an opportunity for change [ 58 , 63 ], for example, by adopting a healthier lifestyle [ 45 ], such as better sleep hygiene [ 50 ]. It was especially retrospectively that they described their developing awareness of the positive aspects of this FEP experience:
Acquisition of new qualities, such as empathy, attention to others [ 62 , 66 , 67 ], self-confidence [ 50 , 67 ], or maturity [ 63 , 66 ]
Better awareness of their own resources [ 45 ]
Better knowledge of themselves [ 50 , 67 ]
A stronger self [ 45 , 58 ]
Increased desire for relationships [ 44 , 67 ]
Enhanced personal ties with their families and friends [ 42 , 53 , 58 , 60 , 64 ]
Creation of new ties to peers who have gone through the same problems [ 54 , 57 , 67 ].
They had the feeling that they had overcome hardships [ 58 , 67 ] and talked about a new outlook on life, a feeling that they could enjoy it more than before [ 66 ].
The families also described the strengthening of bonds between siblings [ 64 ] and between parents and children [ 42 , 53 , 60 ]. Parents did not report any additional positive aspects, although the siblings said that the experience had contributed to their personal development [ 64 ]. They had the impression that they had become more understanding, thoughtful, and “had grown up faster” [ 64 ].
How Do Patients and Families Recount FEPs?
The difficulty of putting it into words.
The patients reported that it was difficult to talk about what they had experienced to their family and friends or to healthcare professionals [ 33 , 36 , 48 , 55 , 62 , 68 ]. Putting it into words amounted only to a description of their symptoms. They could say only that they had had chaotic thoughts that they could no longer control [ 50 ], had “heard voices” [ 45 , 69 ] or felt “paranoid” [ 39 , 43 , 69 ].
Families had little access to the patient’s experience and were mainly able to report withdrawal [ 62 ] and sometimes hallucinations [ 62 ]. They were aware that “something was wrong,” but they did not know what [ 45 ].
Making Sense of What Has Been Experienced?
More than putting it into words, many patients described the importance of making sense of what they had experienced, giving it a meaning to be able to move forward [ 45 , 70 ]. Some patients developed personal theories about the cause of their episode, which helped them to find a meaning and to restore a coherent personal narrative [ 58 ]. Others considered the FEP a mystical experience, even after remission of their symptoms [ 72 ].
The siblings integrated their sister or brother’s FEP within their life narrative, to give it a meaning, for example, by discovering a professional vocation in mental health, induced by this illness in their family [ 40 ]. Others had become informed and acquired medical knowledge to enable them to accept the disease better [ 40 ].
Finally, some very religious parents accepted their child’s disease more easily by giving it a religious meaning [ 71 ].
The results of this metasynthesis enumerate the many questions that patients and their families raise about FEPs. Two points appear to us to be essential to discuss: its simultaneous negative and positive aspects, and the discrepancy between the name “first episode of psychosis” and the experience reported.
An Experience Simultaneously Positive and Negative
The negative aspects of FEPs found in the accounts by patients and their families are well known in the literature and highly present in qualitative studies. One metasynthesis has already been devoted entirely to this subject [ 28 ]. Similarly, the positive changes identified retrospectively by patients have already been the topic of many studies and of a recent systematic review [ 29 ]. Nonetheless, our results also demonstrate that only a minority of patients found the psychotic experience itself positive, that is, the feeling of authenticity and the positive perception of auditory hallucinations. They further show a major difference between the experiences of the patients and those of their families. That is, while many – almost all – patients related at least some positive elements of their FEPs, these aspects are almost totally absent from the families’ accounts.
Healthcare providers must be aware of these 2 original aspects as both need to be addressed during treatment to ensure and maintain the patients’ adherence to care and to offer appropriate support to the families.
The Gap between the Name and the Experience
The lack of detailed descriptions of the FEP experience by the patients, together with their difficulty of putting it into words, raises questions. Three avenues might help to understand this: (i) It might be related to methodological problems: research interviews of people with schizophrenia might benefit from methodological innovations [ 73 ], by the use of narrative aids, such as photo-elicitation, daily journals, and interviews while walking, which have been used successfully in this clinical population [ 29 ]. (ii) This difficulty may also be related to the types of disorders presented by the patients interviewed, but the authors of these studies never mention this. (iii) Finally, the difficulty of putting the experience into words may be explained by a discrepancy between the term “FEP” and the patients’ experience. Our results suggest that the term “first episode” may often be inappropriate, for many patients described experiencing both continuity and rupture, but a rupture without any real beginning. In other words, this may not necessarily be an “episode,” and the patients may have had similar experiences before this so-called “first” episode.
The term FEP has been criticized quite heavily in the literature. First of all, there is no consensual definition. Breitborde et al. [ 74 ] found 3 different definitions of FEP in the literature: (1) first contact with the psychiatric or mental healthcare system, (2) time since the onset of antipsychotic treatment, and (3) time since the onset of psychotic symptoms. This author advocated the use of “recent onset psychosis” instead of FEP, as more consistent with clinical aspects and with the forms with an insidious onset. Our results reinforce this criticism. Moreover, the emergence of the concept may, according to some authors, be linked to medical research and to the needs of the pharmaceutical industry to obtain homogeneous patient populations for randomized clinical trials. In a recent article, Berkhout [ 75 ] proposed a sociohistorical analysis of the development of the concept of FEP. According to her, this term “emerges as a distinct chronological stage of psychotic illness in the late 1980s in response to challenges within schizophrenia research (p2).” FEP may thus be understood not as a clinical entity or a diagnostic category but rather as a research strategy associated with the “paradigm shift” toward early intervention [ 75 ]. Berkhout suggests that FEP is “a product of a particular sociohistorical moment rather than reflective of an independent reality that can be explained in purely scientific terms.” In the same spirit, the Australian guidelines on treatment of FEP [ 76 ] define it as the first treated episode experienced by an individual during his or her lifetime. That is, it is not the first episode but the first episode known and handled by the healthcare system. Accordingly, implicitly, FEP does not name the patient’s lived experience but rather the intervention. Moreover, our results suggest that this aggravates the confusion of these patients, who do not recognize their experience in the diagnosis they are given. This is related to the impact of diagnostic labeling (see ref. [ 77 ]) but adds to it specific questions about the effect of a term imposed on patients even though it makes no sense for them. We think that this terminological obstacle can directly impact these patients’ long-term adherence to care. This also echoes the work of Ian Hacking, about mutual interactions between human phenomena and their classifications [ 78 ].
Implications
When specialized FEP services are implemented, we would therefore recommend giving special attention to naming the service. We would recommend avoiding terms such as “first episode psychosis clinic,” but rather choose “early intervention in psychosis service.” The best option to fit recovery and empowerment principles would even be to let service users choose the name of the unit during the creation process. The variety of experiences among individuals is so wide that labeling the experience will necessarily be unsatisfying. Thus, our options are either to choose a term voluntarily vague and general, or to name, not the experience of the illness (as would “first episode psychosis” does), but the experience of care (as “first treated episode” does).
The same applies in clinical practice: naming the experience of care rather than the experience of illness should also be the ground rule while taking care of these patients so to avoid confusion and dropouts. Moreover, psychiatrists must be aware that there is a “looping effect” between the lived experience of the patient and the diagnostic label [ 78 ], so when patients receive a diagnosis, they interact with it, it affects their experience, and ultimately their experience affects the diagnosis. We would thus recommend therapeutic approaches enabling patients and their family to formulate their own narrative of the psychotic experience, such as the Open Dialogue approach [ 79 ].
Strengths and Limitations
This review integrates the views about FEP from 378 patients and 176 relatives. The method we applied is rigorous, tested in medical research [ 80 ], and meets the criteria of the ENTREQ guidelines. We analyzed 38 articles, all published in peer-reviewed journals and mostly of good quality.
However, certain aspects of this metasynthesis limit the generalization of its conclusions. A qualitative metasynthesis collects only partial data from the participants and the interpretations of the researchers, which are the data given in the initial articles. Moreover, we note that although the review includes articles from diverse cultural areas, articles from English-speaking countries are overrepresented. It is nonetheless likely that the literature accessible through these international databases would overrepresent English-speaking countries even if we had selected articles in all languages.
Finally, our review did not integrate the lived experience of healthcare professionals. To our knowledge, there are only 3 qualitative studies [ 81 - 83 ] on that topic, and all 3 consider the experience of care more than that of the disease. Further qualitative research is needed within this population to cross perspectives with patients and families.
This metasynthesis has enabled us to identify a specific issue concerning the use of a term such as FEP, which comes from neither a clinical nor an experiential framework. There is a danger in using terms developed for the organization of care and public health issues as clinical entities and diagnostic categories. In our opinion, this can aggravate the confusion of patients and their families and have a harmful effect on their continuation of care. Recent decades have seen a movement in medicine from a doctor-centered to a patient-centered approach focusing on shared decision-making and patient participation and in which doctors try to see the illness through their patients’ eyes. In the same spirit, psychiatric nosography must be thought out and developed from what patients experience rather than from the needs or expectations of the healthcare system, or it may end up creating a gap between experience and label that may be harmful for patients. As Albert Camus wrote, “Misnaming an object adds to the misery of this world” [ 84 ].
Acknowledgment
The authors would like to thank Jo Ann Cahn for her rigorous translation.
Conflict of Interest Statement
The authors have no conflicts of interest to declare.
Funding Sources
There are no funding sources to declare.
Author Contributions
J.S. and A.R.-L. designed the study; A.N., I.O., E.M., and J.S. searched the databases and selected the articles. A.N., L.V., and J.S. coded the papers to define the themes and wrote the article in collaboration. L.V., A.R.-L., and J.S. supervised the study. A.N. and J.S. wrote the original draft, and all authors reviewed and edited the final version.
The total of men and women does not equal the total number of participants, because several studies did not report the sex of their participants.
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- National Early Psychosis Project Clinical Guidelines Working Party. Australian Clinical Guidelines for Early Psychosis. Melbourne: National Early Psychosis Project, University of Melbourne, 1998. Melbourne: University of Melbourne; 1998.
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- Camus A. Sur une philosophie de l’expression. In: Oeuvres complètes Tome 1. Paris: Gallimard; 1944. p. 908.
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Received: December 05, 2019 Accepted: August 11, 2020 Published online: October 29, 2020 Issue release date: December 2020
Number of Print Pages: 16 Number of Figures: 2 Number of Tables: 5
ISSN: 0254-4962 (Print) eISSN: 1423-033X (Online)
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Disengagement from early psychosis intervention services: an observational study informed by a survey of patient and family perspectives
- Alexia Polillo 1 ,
- Aristotle N. Voineskos ORCID: orcid.org/0000-0003-0156-0395 1 , 2 ,
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- Sean A. Kidd 1 , 2 ,
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- Wei Wang 1 ,
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Schizophrenia volume 8 , Article number: 94 ( 2022 ) Cite this article
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Approximately one-third of patients with early psychosis disengage from services before the end of treatment. We sought to understand patient and family perspectives on early psychosis intervention (EPI) service engagement and use these findings to elucidate factors associated with early disengagement, defined as dropout from EPI in the first 9 months. Patients aged 16–29 referred to a large EPI program between July 2018-February 2020 and their family members were invited to complete a survey exploring facilitators and barriers to service engagement. A prospective chart review was conducted for 225 patients consecutively enrolled in the same EPI program, receiving the NAVIGATE model of coordinated specialty care, between July 2018-May 2019. We conducted a survival analysis, generating Kaplan–Meier curves depicting time to disengagement and Cox proportional hazards models to determine rate of disengagement controlling for demographic, clinical, and program factors. The survey was completed by 167 patients and 79 family members. The top endorsed engagement facilitator was related to the therapeutic relationship in both patients (36.5%) and families (43.0%). The top endorsed barrier to engagement was medication side effects in both patients (28.7%) and families (39.2%). In Cox proportional hazards models, medication nonadherence (HR = 2.37, 95% CI = 1.17–4.80) and use of individual psychotherapy (HR = .460, 95% CI = 0.220–0.962) were associated with early disengagement, but some of the health equity factors expected to affect engagement were not. Findings suggest that delivery of standardized treatment may buffer the effects of health disparities on service disengagement in early psychosis.
Introduction
Early psychosis intervention (EPI) is a model developed to provide treatment early in the course of psychotic illness with the goal of improving patients’ long-term trajectories and reducing burden on young people and their families. While evidence suggests that young people with psychosis can achieve superior outcomes in EPI 1 , 2 , 3 , 4 , approximately one-third disengage from services prematurely 5 , 6 , with rates ranging from 12% to 53% due to variations in how disengagement was defined and length of follow-up 6 , 7 . Though there is no known minimum duration of EPI services required to achieve positive outcomes, evidence from randomized-controlled trials and real-world effectiveness studies in support of EPI have examined outcomes at 1–3 years. Few studies have examined early disengagement from services, presenting an opportunity to establish a consistent definition for it that considers timing, measures, quality, and extent of disengagement.
Considerable literature on EPI engagement is drawn from observational cohort studies producing inconsistent and contradictory results with respect to factors associated with disengagement from EPI services. To date, few factors, including a lack of family support, lower medication adherence, and problem substance use, have emerged as robust predictors of EPI disengagement 5 , 7 . However, most studies have used living with family as a proxy for family support, whereas patients may live with family members who are not involved in their mental health treatment or have substantial support from family members but do not reside together. Legal involvement has also been associated with disengagement, but not widely tested 5 , 7 . Other factors known to be associated with disengagement from general mental health services have not been adequately explored in early psychosis, including homelessness and race/ethnicity 7 , 8 , and may be of particular importance to programs in diverse urban centers.
Additional gaps relate to understanding disengagement from patient and family member perspectives 8 . Qualitative studies have elicited factors influencing engagement from patients, such as individualized care, program attributes, family influences, and personal characteristics 9 , 10 , with few studies exploring barriers to engagement. In a recent qualitative meta-synthesis, stigma, distressing experiences prior to care, inconsistencies between patient needs and treatment plan, patients’ desire to treat their condition without services, and duration and intensity of EPI care were cited as factors that may pose barriers to engagement later in treatment 9 . These themes warrant exploration in larger samples and could be used to explore factors that may contribute to disengagement early in care. Integrating chart review and survey methods to understand EPI disengagement may provide more insight into early disengagement and resolve inconsistencies from observational studies by eliciting feedback directly from patients and family members with lived experience and using this expertise to inform the observational study.
We sought to understand patient and family perspectives on service engagement in an EPI program and use these findings to guide the investigation of factors associated with early disengagement in a cohort of patients in the same program. The current study had two objectives: (1) to understand patient- and family-reported facilitators and barriers to engagement and (2) to investigate factors associated with early disengagement from EPI services. Early disengagement was defined as dropout from services within the first 9 months of treatment. We hypothesized that a lack of family support, lower medication adherence, and problem substance use would be associated with an increased risk of early disengagement from EPI services 5 , 7 , 11 . We also explored a relationship between homelessness, legal involvement, and race/ethnicity with early disengagement.
Overview and study design
The Centre for Addiction and Mental Health (CAMH) in Toronto, Canada houses the largest EPI program in the country. Based on Ontario EPI Program Standards, it aims to provide comprehensive treatment delivered by a multidisciplinary team early in the course of illness 12 . The program provides consultation for young people up to age 29 with provisional psychosis and offers up to three years of treatment for individuals aged 16–29 with affective, non-affective, and substance-induced psychosis. Patients who are appropriate for EPI but have a closer service are bridged to their local program. CAMH uses the NAVIGATE model of coordinated specialty care, consisting of four core treatment services: individual resiliency training (IRT), supported employment and education (SEE), family education, and individualized medication management 12 , 13 .
Patients are considered to have disengaged from the program if they are formally discharged or did not attend appointments for a period of three months or more, despite still requiring ongoing treatment as assessed by their clinician. Efforts to engage a patient prior to considering them disengaged are individualized to the patient but generally include multiple methods of contact (phone, email, or through family members with consent) over a period of 3 months. Patients are finally sent a letter informing them that they will be discharged if there is no further contact within the next month.
For the survey, we invited people aged 16–29 referred to the program between July 2018-February 2020 and their family members to complete a survey exploring facilitators and barriers to engagement in EPI services. A prospective chart review was conducted of the records of 225 patients who were consecutively enrolled in EPI services at CAMH and attended at least one follow-up appointment between July 1, 2018-May 6, 2019. This observational study is reported according to the STROBE guidelines (Supplementary Table S1 ) 14 . The sample size was determined to have sufficient power (80%) to detect risk factors with a hazard ratio as low as 1.91 with an overall disengagement rate of 33.3% and a hazard ratio of 2.26 with a disengagement rate of 20%. All procedures involving human subjects/patients were approved by the Research Ethics Board (REB) at CAMH. Participants provided informed consent electronically for surveys, but chart review consent was not required as per CAMH’s REB.
Survey Procedures
We used Research Electronic Data Capture (REDCap), a secure web-based platform with built-in tools for data collection and storage, to send web-based consent forms and surveys to patients and families referred to EPI services 15 , 16 , 17 . Participants who provided verbal consent to the clinic administrator were sent an electronic consent form by email or text message, or approached and consented in person. Web-based surveys were sent automatically 30 days after participants consented to the study to capture early experiences in the program, with follow-up email and phone reminders. Participants were compensated with a $10 gift card or e-gift card.
Survey questions
Participants were asked about demographic factors based on a standardized health equity tool 18 , service utilization, facilitators and barriers to engagement in mental health treatment, and suggestions for improving EPI service engagement. Items relevant to EPI engagement were chosen from validated tools that measure aspects of service engagement, including the Service Engagement Scale (items were adapted to be patient-rated rather than clinician-rated) 19 , the Working Alliance Inventory (WAI) 20 , and Scale To Assess the Therapeutic Relationship in Community Mental Health Care: Patient Version (STAR-P) 21 , as well as other aspects of “youth-friendly” services identified in the literature 22 . Respondents were asked to check all facilitators and barriers that applied to them and then rank their top 5.
Observational study
Observational study procedures.
Trained research staff extracted data from CAMH’s electronic health record into a structured REDCap database at three months (representing the first three months of treatment) and 9 months. Every twentieth chart was extracted by the principal investigator and two research staff to assess interrater reliability, which ranged from moderate to almost perfect (Gwet’s AC, 0.43–1.00 and intraclass correlation, 0.98) 23 , 24 .
Observational study variables
The primary outcome of early disengagement, defined as dropout from services within the first nine months of EPI treatment, was distinguished from all-cause discharge, which included transitions to local EPI programs or other mental health services. Our definition of early disengagement was clinician-defined and based on the structure of CAMH’s EPI program and delivery of the NAVIGATE model. Services are offered to patients for up to three years with the majority of NAVIGATE content delivered in the first two years of treatment, and core modules offered during the first year. Patients in the study were coded as having disengaged from services if they were formally discharged or did not attend appointments for a period of three months or more, despite still requiring ongoing treatment as assessed by their clinician 11 . For patients who disengaged for other reasons, data were censored at the time of patient death, move to another country, or transfer to EPI or other local mental health services. Data were also censored for patients still engaged in the program at nine months.
Most baseline demographic variables were extracted from CAMH’s standardized Health Equity Form routinely completed by patients at their first appointment 18 . Demographic variables included age, gender, self-reported racial/ethnic group, country of birth, living situation, employment status, and highest level of education. Additional variables were extracted from clinician documentation, including any documented experience of homelessness, legal involvement, family involvement in care, problem substance use, diagnoses, referral source, and distance to the clinic calculated as the number of kilometres between participant’s home address and the clinic using postal codes. Use of IRT and SEE, as well as medication nonadherence, defined by any documentation of nonadherence among patients who were taking antipsychotic or mood-stabilizing medication, were captured through clinical documentation in the first 3 months of care. Recoded variables are outlined in Supplementary Table S2 .
Statistical Analysis
Descriptive statistics were calculated for demographic characteristics of patients and family members who completed the survey, and proportion of patients and family members who endorsed each facilitator, barrier, and suggestion to improve engagement. Descriptive statistics were also calculated for the full sample of patients in the observational study and based on engagement status.
We modelled time-to-disengagement, calculated as the number of days from first treatment encounter to the day patients were last actively engaged in treatment, using a Kaplan–Meier curve. In addition to age and gender, we selected variables thought to be associated with disengagement based on past EPI literature (family involvement in care, problem substance use) 5 , 7 and general mental health literature (racial/ethnic group, homelessness) a priori. Employment status, legal involvement, living alone, and medication nonadherence were added to the model based on emergent evidence of their association with EPI disengagement 7 . Based on survey findings highlighting the importance of the therapeutic relationship, we examined use of two components of NAVIGATE in the first 3 months of care, IRT and SEE. IRT is delivered by a clinician who also provides case management, which is sometimes prioritized early in care. SEE is typically offered as early as possible in treatment. Survey findings lent support to test the relationship between medication nonadherence and disengagement, as well as distance to services.
Although our study integrated two types of quantitative methods, we used a traditional mixed methods analysis approach: an exploratory sequential design to test effects of variables identified in the survey as key facilitators and barriers to engagement and a cross-case matrix to identify complementary and contradictory findings (reported in Table 1 ) 25 , 26 .
Log-rank tests and Cox proportional hazards models were used to examine the relationship between selected variables and rate of early disengagement after checking the proportionality of the hazard function over time assumption using statistical tests and graphical diagnostics of Schoenfeld residuals. The most prevalent category was used as the reference group. Univariable tests were performed with covariates independently to obtain the univariable hazard ratios. Covariates that were statistically significant at an a priori level of p < 0.25 were retained in the final multivariable analysis. Analyses were conducted using Stata statistical software 27 . Responses were excluded for patients who indicated declined, don’t know, or prefer not to answer on structured health equity questions. All statistical tests were two-tailed and considered statistically significant at a p value < 0.05.
A total of 447 patients and 187 family members agreed to receive the consent form, with 48.3% ( n = 216) of patients and 58.3% ( n = 109) of family members consenting to participate in the study. Of those who consented, 77.3% ( n = 167) of patients and 72.5% ( n = 79) of family members completed the survey 28 . Patients were a mean age of 22.8 ± 3.5 years, 45.8% were male, 64.1% lived with family, 37.0% were white, 58.3% were vocationally active, and 63.5% were born in Canada. Family members were a mean age of 47.8 ± 12.6, 59.5% were mothers, 72.2% lived with the identified patient, and 70.9% completed postsecondary education (Table 2 ).
Top facilitators
Top patient-reported facilitators of engagement related to the therapeutic relationship, with patients highlighting the importance of feeling understood by their clinician (36.5%, n = 61; Supplementary Table S3 ) and agreeing on a treatment plan (34.1%, n = 57), as well as having discussions about personal goals and thoughts about treatment (43.7%, n = 73). Other top facilitators included patients’ self-reported motivation and commitment to treatment (41.9%, n = 70) and location of EPI services (35.3%, n = 59). Similarly, top family-reported facilitators were patients having a positive impression of the clinician (43.0%, n = 34), their level of motivation and commitment to treatment (36.7%, n = 29), believing treatments are helpful (36.7%, n = 29), location of EPI services (32.9%, n = 26), and having help from family members with transportation and appointments reminders (34.2%, n = 27).
Top barriers
Medication side effects was the top patient- and family-reported barrier to engagement, endorsed by 28.7% ( n = 48) and 39.2% ( n = 31) respectively. Forgetting or losing track of appointments (25.7%, n = 43), stigma related to coming to a hospital (24.0%, n = 40), past experiences with services (21.0%, n = 35), feeling uncomfortable leaving the house or going to an unfamiliar place (18.6%, n = 31), and location of services (18.6%, n = 31) were also identified as barriers to engagement by patients. Other top family-reported barriers included location of services (26.6%, n = 21), times services are offered (19.0%, n = 15), patients wanting to address problems without professional help (16.5%, n = 13), and disliking or not trusting the clinician (17.7%, n = 14).
Suggestions for improvements
Both patients and family members suggested their engagement in services could be improved with evening ( n = 54, 32.3% and n = 30, 38.0%) and weekend appointments ( n = 57, 34.1% and n = 36, 45.6%), as well as appointment reminders ( n = 61, 36.5% and n = 43.0%; Supplementary Table S4 ). Patients cited text message ( n = 46, 27.5%) and email ( n = 49, 29.3%) communication to improve engagement, while family members suggested text message ( n = 29, 36.7%) communication and more involvement of family members and other supports in treatment ( n = 34, 43.0%).
Observational cohort
Baseline characteristics are described in Table 3 . Of the full sample of 225 patients, 44.4% ( n = 100) of patients were not in treatment at 9 months. Approximately one quarter (26.7%; n = 60) of patients were transferred to EPI or other mental health services closer to home, had died, or had moved out of the country, and 17.8% ( n = 40) dropped out of EPI services early. Median time to dropout for those who disengaged early was 94.5 days (IQR = 25.5–142) or approximately 3 months (Fig. 1 ).
Data were censored at the time of discharge for reasons other than disengagement, including death, move to another country, or transfer to EPI or other local mental health services. Data were also right-censored for patients still engaged in the program at 9 months.
Results of the log-rank tests are reported in Supplementary Table S5 and the Cox proportional hazards models are reported in Table 4 . In univariable models, having legal involvement (HR = 2.24, 95% CI = 1.16–4.35) was associated with an increased risk of early disengagement, while early use of IRT (HR = 0.310, 95% CI = 0.155–0.621) and early use of SEE (HR = 0.366, 95% CI = 0.174–0.770) were associated with a decreased risk of disengagement in the first nine months of treatment. Having a documented experience of homelessness (HR = 1.55, 95% CI = .789–3.05), identifying as Asian (HR = 0.430, 95% CI = 0.163–1.13), and early medication nonadherence (HR = 1.90, 95% CI = 0.984–3.68) met the threshold for inclusion in our multivariable model. In the multivariable model, only early medication nonadherence (HR = 2.37, 95% CI = 1.17–4.80) and early use of IRT (HR = 0.460, 95% CI = 0.220–0.962) had a statistically significant association with disengagement, while the effect of early use of SEE (HR = 0.457, 95% CI = 0.200–1.04) approached statistical significance.
In a large, urban EPI program delivering a standardized model of coordinated specialty care, we found that almost one-fifth of patients disengaged early. Two factors traditionally associated with disengagement among young people with psychosis—problem substance use and lack of family support—were not associated with early disengagement. Additional equity-related factors, including homelessness and race/ethnicity, were similarly not found to be associated with early disengagement. Instead, adherence to specific components of the NAVIGATE model in the first 3 months of care, particularly medication and IRT, predicted disengagement at 9 months of treatment. Similar themes were echoed in the surveys, with patients and families endorsing medication side effects as a top barrier and the therapeutic relationship as a top facilitator to engagement. Appointments outside of business hours, use of reminders, and communication leveraging technology, including text message and email, were endorsed by patients and family members as suggestions to improve engagement in EPI services. These findings point to specific factors that can be identified and addressed early in care to improve engagement and suggest that structured models of care may buffer effects of traditional factors found to be associated with disengagement.
Our early disengagement rate is in the lower range of those found in a recent systematic review, which identified rates ranging between 12% and 53% 7 . However, inconsistencies in the way disengagement is assessed and length of study follow-up can make it difficult to draw accurate comparisons across studies and contributes to inconclusive findings about which factors best predict disengagement 7 , 29 . Qualitative research can help unpack the complexity of EPI disengagement. A qualitative study identified changing priorities, perspectives on treatment, needs, and levels of autonomy as factors that help shape a patient’s decision to disengage from EPI services 30 . These factors move beyond traditional indicators of engagement and can help us better define and understand it; however, more qualitative research is needed.
The definition of disengagement in past studies also does not differentiate between patients who dropped out of services and those who were discharged for other reasons, including transitioning to services closer to home 7 , potentially inflating the number of patients who disengaged. Past studies have also focused on longer term disengagement in the first 2 to 3 years of treatment, with little attention given to early disengagement. Our focus on patients who have dropped out of EPI services in the first 9 months may have better potential to improve service retention early in care.
In contrast to previous studies, we did not find that family support, defined by living with family or family involvement in care, was associated with early disengagement from EPI services. NAVIGATE clinicians proactively engage family members early in treatment 13 , which may explain the high rates of family involvement in our study. It is possible that using a low threshold for determining family support diluted the impact that might be observed with higher-quality family engagement. Similarly, no association was found between problem substance use and early disengagement. Substance use education and coping skills provided through IRT modules may have mediated the risk of disengaging for those with problem substance use through harm reduction principles 31 , 32 , 33 . Legal involvement was found to predict disengagement in univariable models, but was better explained by clinical and service use factors in multivariable models. Patients navigating the legal system may have difficulties engaging in treatment due to competing priorities, including meetings with lawyers and attending court hearings, as well as having more acute needs and treatment delays 34 , 35 , which can increase the risk of disengagement. Continued efforts to provide opportunities to patients with legal involvement to engage in EPI should be a priority, as the model has been shown to reduce criminal accusations 36 .
Consistent with past research 7 , medication nonadherence emerged as a predictor of early disengagement. This finding can be explained in a few ways: first, antipsychotic and mood stabilizing medication may cause intolerable side effects leading the patient to become nonadherent, and this negative experience sows mistrust, leading to service disengagement. This explanation is supported by survey findings, with patients and families reporting medication side effects as a top barrier to engagement. Second, patients who are nonadherent to medication decompensate and become too disorganized or lack the insight to engage in treatment 37 . Poor therapeutic alliance, medication side effects, and a lack of psychoeducation and insight into illness among patients have been identified as factors that can influence nonadherence in past studies 6 , 7 , 37 , 38 . Third, there may be common underlying factors, such as lack of insight or increased symptomology 7 , 39 , contributing to both nonadherence and disengagement. Nevertheless, these findings lend support for shared decision-making, leveraging standardized assessments of medication and side effects, psychoeducation on the risks of medication nonadherence, use of minimum effective dosing, and long-acting injectable formulations to improve medication nonadherence.
Use of the full range of recovery-oriented services in EPI was associated with lower rates of early disengagement, namely, IRT and SEE. IRT uses a strengths-based approach to psychotherapy, with a focus on shared decision-making, psychoeducation, illness self-management, and recovery goal setting 40 . Features of IRT and NAVIGATE more broadly, particularly the therapeutic alliance and perceived autonomy, have been associated with prolonged treatment participation 41 , 42 , but more research is needed to understand which aspects of IRT facilitate engagement. The impact of the therapeutic relationship on engagement was also salient in the surveys and likely contributes to the success of IRT. IRT provides an opportunity to build trust with patients and work through past negative experiences with services, which patient surveys identified as a barrier to engagement. Having a strong therapeutic relationship with patients in the context of IRT has been associated with improved mental health and quality of life outcomes 41 . However, this is contingent on patients participating in treatment and still raises questions about how to actively engage patients early in care.
The relationship between use of IRT and service engagement can also be explained by underlying patient factors, that is, the same patients who are likely to use IRT are likely to remain engaged in services. Nonetheless, few past studies have examined specific treatment components as influencing service engagement in EPI, whereas we found that if patients used these components early on, they were less likely to disengage. This suggests that standardizing care may buffer effects of health disparities so long as patients use the various components. It may also be helpful to implement a more targeted approach to identify, stabilize, and actively engage patients early in treatment who may be vulnerable to disengaging, using strategies to develop the therapeutic relationship, building motivation to use IRT through motivational interviewing, and providing education about and close monitoring of medication side effects.
Suggestions for improving engagement in EPI services were to offer appointments outside of traditional work hours, provide appointment reminders, more actively involve family members or other supports in treatment, and leverage digital tools, including text message and email communication. Interestingly, over half of patients and family members did not endorse virtual appointments as a suggestion to improve engagement (this survey was completed prior to the shift to virtual care amid the COVID-19 pandemic). These findings may be explained by concerns about confidentiality, losing in-person interactions with their care team, affordability, technology issues, or lacking digital literacy skills 43 . These perspectives may have now shifted as patients and families become more comfortable with virtual care as a feasible service delivery method 44 , especially for those who may not feel comfortable leaving the house, experience stigma coming to a hospital, or do not live close to services, all of which emerged as top barriers to engagement in the surveys. Virtual care has the potential to make appointments more flexible and maintain or improve appointment attendance 44 , 45 , 46 , but it is not a one-size-fits-all approach; a blended treatment model may benefit patients at different points in their care journey, though more high-quality trials are needed to examine the clinical effectiveness of virtual and blended models of care 47 .
Our study has several strengths, including the integration of survey and chart review data to better understand the complexities of disengagement. We also captured reasons for disengagement by distinguishing all-cause disengagement from early dropout from services and focused on the critical period early in treatment. However, we were not able to explicitly capture the experiences of patients who disengaged from services because they felt better and/or received what they wanted or needed from treatment, highlighting an area for future research. While it is unclear why some factors historically associated with disengagement did not have a substantive effect in our models, measurement issues may have contributed as we could only extract information recorded in patient charts. For example, problem substance use was captured through clinical documentation as standardized measures were not available. We also used a broad definition of family support, defined by presence of a family member at any appointment, which does not capture engagement quality.
Although our chart review relied mostly on structured assessments, extraction of information from narrative documentation was less reliable; for example, interrater reliability was considered moderate for medication nonadherence. Furthermore, diagnosis at consult was made by psychiatrists rather than structured diagnostic assessment, and therefore only reported as affective vs. nonaffective psychosis rather than specific diagnoses. This may be a missed opportunity given recent findings that a diagnosis of schizophreniform or brief psychotic disorder was associated with EPI service disengagement 48 . More structured ways of capturing key variables are needed; we chose to use chart review because of concerns that relying on participant recruitment and primary data collection would not capture those at highest risk of disengagement. Disengagement risk may also be better explained by other unmeasured factors, including standardized measures of symptom severity and functioning, which we were not able to include due to low completion rates. The Service Engagement Scale is a useful measure completed in the clinic that would have provided a continuous measure of engagement, but few were completed.
Our study suggests that some patients are vulnerable to disengagement early in EPI care. However, early engagement of patients in structured components of coordinated specialty care may help retain them, possibly buffering the risks of health disparities that contribute to disengagement. Focusing efforts on methods for managing medication side effects, encouraging use of IRT early in care to build the therapeutic relationship, and implementing digital strategies to help address practical challenges of attending appointments may help facilitate early engagement. Future studies may specifically target young people with psychosis who have disengaged from services to share their perspectives and contextualize the growing literature from observational data in this area.
Data availability
The data that support the findings of this study are available from the corresponding author, NK, upon reasonable request to protect the privacy and confidentiality of participants.
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Acknowledgements
The authors wish to acknowledge Andreea Sav for support with data collection, Royce Jean-Louis for data management support and Augustina Ampofo for providing feedback on the recruitment materials and survey. This work was supported by an award from the 2017 Slaight Family Centre for Youth in Transition Internal Funding Competition through the CAMH Foundation. AP’s work was supported by a Mitacs Elevate Postdoctoral Fellowship.
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Alexia Polillo, Aristotle N. Voineskos, George Foussias, Sean A. Kidd, Sarah Bromley, Sophie Soklaridis, Wei Wang, Vicky Stergiopoulos & Nicole Kozloff
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NK conceptualized the study, with additional input from G.F., A.N.V., S.A.K., S.B., S.S., W.W. and V.S. A.P. and N.K. extracted and analysed the data and drafted and revised sections of the paper. G.F., A.N.V., S.A.K., S.B., S.S., W.W. and V.S. made critical revisions and approved the final version.
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Polillo, A., Voineskos, A.N., Foussias, G. et al. Disengagement from early psychosis intervention services: an observational study informed by a survey of patient and family perspectives. Schizophr 8 , 94 (2022). https://doi.org/10.1038/s41537-022-00300-5
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