Implementing and Evaluating a National Integrated Digital Registry and Clinical Decision Support System in Early Intervention in Psychosis Services (Early Psychosis Informatics Into Care): Co-Designed Protocol.

BACKGROUND: Early intervention in psychosis (EIP) services are nationally mandated in England to provide multidisciplinary care to people experiencing first-episode psychosis, which disproportionately affects deprived and ethnic minority youth. Quality of service provision varies by region, and people from historically underserved populations have unequal access. In other disease areas, including stroke and dementia, national digital registries coupled with clinical decision support systems (CDSSs) have revolutionized the delivery of equitable, evidence-based interventions to transform patient outcomes and reduce population-level disparities in care. Given psychosis is ranked the third most burdensome mental health condition by the World Health Organization, it is essential that we achieve the same parity of health improvements. OBJECTIVE: This paper reports the protocol for the program development phase of this study, in which we aimed to co-design and produce an evidence-based, stakeholder-informed framework for the building, implementation, piloting, and evaluation of a national integrated digital registry and CDSS for psychosis, known as EPICare (Early Psychosis Informatics into Care). METHODS: We conducted 3 concurrent work packages, with reciprocal knowledge exchange between each. In work package 1, using a participatory co-design framework, key stakeholders (clinicians, academics, policy makers, and patient and public contributors) engaged in 4 workshops to review, refine, and identify a core set of essential and desirable measures and features of the EPICare registry and CDSS. Using a modified Delphi approach, we then developed a consensus of data priorities. In work package 2, we collaborated with National Health Service (NHS) informatics teams to identify relevant data currently captured in electronic health records, understand data retrieval methods, and design the software architecture and data model to inform future implementation. In work package 3, observations of stakeholder workshops and individual interviews with representative stakeholders (n=10) were subject to interpretative qualitative analysis, guided by normalization process theory, to identify factors likely to influence the adoption and implementation of EPICare into routine practice. RESULTS: Stage 1 of the EPICare study took place between December 2021 and September 2022. The next steps include stage 2 building, piloting, implementation, and evaluation of EPICare in 5 demonstrator NHS Trusts serving underserved and diverse populations with substantial need for EIP care in England. If successful, this will be followed by stage 3, in which we will seek NHS adoption of EPICare for rollout to all EIP services in England. CONCLUSIONS: By establishing a multistakeholder network and engaging them in an iterative co-design process, we have identified essential and desirable elements of the EPICare registry and CDSS; proactively identified and minimized potential challenges and barriers to uptake and implementation; and addressed key questions related to informatics architecture, infrastructure, governance, and integration in diverse NHS Trusts, enabling us to proceed with the building, piloting, implementation, and evaluation of EPICare. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50177.

Show me you care: A patient- and family-reported measure of care experiences in early psychosis services.

AIM: Despite their emphasis on engagement, there has been little research on patients' and families' experiences of care in early intervention services for psychosis. We sought to compare patients' and families' experiences of care in two similar early psychosis services in Montreal, Canada and Chennai, India. Because no patient- or family-reported experience measures had been used in a low- and middle-income context, we created a new measure, Show me you care. Here we present its development and psychometric properties. METHODS: Show me you care was created based on the literature and stakeholder inputs. Its patient and family versions contain the same nine items (rated on a 7-point scale) about various supportive behaviours of treatment providers towards patients and families. Patients (N = 293) and families (N = 237) completed the measure in French/English in Montreal and Tamil/English in Chennai. Test-retest reliability, internal consistency, convergent validity, and ease of use were evaluated. RESULTS: Test-retest reliability (intra-class correlation coefficients) ranged from excellent (0.95) to good (0.66) across the patient and family versions, in Montreal and Chennai, and in English, French, and Tamil. Internal consistency estimates (Cronbach's alphas) were excellent (≥0.87). The measure was reported to be easy to understand and complete. CONCLUSION: Show me you care fills a gap between principles and practice by making engagement and collaboration as central to measurement in early intervention as it is to its philosophy. Having been co-designed and developed in three languages and tested in a low-and-middle-income and a high-income context, our tool has the potential for global application.

Fit for purpose: Conception and psychometric evaluation of developmentally appropriate measures to assess functional recovery in first-episode psychosis across geo-cultural contexts.

OBJECTIVE: Given the paucity of functional recovery measures for young people with psychosis, we developed and conducted psychometric testing of the Functional Outcomes Interview (FOI) and the Roles and Aspirations Among Youth scale (RAY; a much-needed patient-reported outcome measure). METHOD: Both measures were developed in English, Tamil, and French through discussions with professionals, participants, and families at early psychosis programs in Canada and India. The FOI assesses the number and tenure of functional roles and allows the nuanced assessment of each role in terms of performance, need for support, and quality of social contacts. The roles include work, school, household responsibilities, parenting/caregiving, and efforts to return to work/school. The RAY is a self-report of current roles and future aspirations. Test-retest reliability, internal consistency, factorial validity, and concurrent validity for the RAY; and inter-rater reliability (IRR), internal consistency, and concurrent validity for the FOI were assessed. RESULTS: The RAY had adequate internal consistency and temporal stability and was unidimensional in factor analysis. The FOI had acceptable IRR and internal consistency, as evinced by comparable performance ratings across functional roles. Significant associations between our novel measures and well-established measures of functioning and negative symptoms indicate concurrent validity. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The FOI and RAY were designed to be youth friendly, assess aspirations, and acknowledge individuals as desiring and holding multiple roles. They thus represent a significant advancement in assessing functional recovery in first-episode psychosis. Having been tested in two distinct settings, these measures show promise for wider deployment across geo-cultural contexts. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Adapting, updating and translating the Social Functioning Scale to assess social, recreational and independent functioning among youth with psychosis in diverse sociocultural contexts.

AIM: To compare social, recreational and independent functioning among persons with psychosis across two geo-cultural contexts, we adapted the well-established Social Functioning Scale (SFS) and translated it into French and Tamil. We present the development and psychometric testing of this adaptation, the SFS-Early Intervention. METHODS: Sixteen items were added to reflect contemporary youth activities (e.g., online games) and 31 items adapted to enhance applicability and/or include context-specific examples (e.g., 'church activity' replaced with 'religious/spiritual activity'). Psychometric properties and participant feedback were evaluated. RESULTS: Test-retest reliability (ICCs) ranged from 0.813 to 0.964. Internal consistency (Cronbach's α) ranged from .749 to .936 across sites and languages. Correlations with original subscales were high. The scale was rated easy to complete and understand. CONCLUSIONS: The SFS-Early Intervention is a promising patient-reported measure of social, recreational and independent functioning. Our approach shows that conceptually sound existing measures are adaptable to different times and contexts.

Engagement in specialized early intervention services for psychosis as an interplay between personal agency and critical structures: A qualitative study.

BACKGROUND: Specialized early intervention programs for individuals experiencing a first episode of psychosis prioritize service engagement, generally operationalized as attendance, treatment completion, therapeutic alliance, and treatment adherence. However, there are critical theoretical and methodological gaps in understanding how service users experience and define their engagement with the service. OBJECTIVES: This study aimed to explore how current and former service users define their engagement with a specialized early intervention program. DESIGN: A qualitative descriptive approach was used to explore service users' decisions to use, remain involved with, and/or leave early intervention services. SETTING: This study took place in an early intervention service for psychosis in Montreal, Canada. PARTICIPANTS: Twenty-four participants who had experienced a first episode of psychosis and had been engaged in the service to varying degrees (fully engaged, partially engaged, disengaged) took part in in-depth interviews. METHODS: In-depth interviews were employed to collect rich insights into participants' experiences and perceptions. The interviews were transcribed and analysed using thematic analysis, beginning with an inductive approach and completing the analysis using a theoretical approach. During the analysis, our original notions of engagement and disengagement were challenged by theorizing engagement in terms of agency and structure. Researchers engaged in reflexive practices to maintain and promote research rigor and trustworthiness. RESULTS: Participants' narratives were thematically analyzed and organized into three themes: fluidity and temporality of engagement and disengagement; engagement as an ongoing negotiation; and critical structures and agency. Participants described engagement in a variety of ways, some of which were broader than service use and focused on self-care and commitment to recovery. These conceptions were subject to change as the individuals' perceptions of their needs changed. As needs changed, individuals also negotiated and renegotiated their care needs with themselves and with their treatment team. These exercises of agency were constrained by key structures: the treatment team, family and friends, and societal conceptions of mental health. CONCLUSIONS: Our study findings argue for an expanded definition of engagement which prioritizes individuals' experience and acknowledges the steps towards recovery that they may make outside of the purview of the service. It also underlines the importance of a treatment structure which aligns with individuals' needs for both support and autonomy.

ShareDisk: A novel visual tool to assess perceptions about who should be responsible for supporting persons with mental health problems.

OBJECTIVES: Views on who bears how much responsibility for supporting individuals with mental health problems may vary across stakeholders (patients, families, clinicians) and cultures. Perceptions about responsibility may influence the extent to which stakeholders get involved in treatment. Our objective was to report on the development, psychometric properties and usability of a first-ever tool of this construct. METHODS: We created a visual weighting disk called 'ShareDisk', measuring perceived extent of responsibility for supporting persons with mental health problems. It was administered (twice, 2 weeks apart) to patients, family members and clinicians in Chennai, India (N = 30, 30 and 15, respectively) and Montreal, Canada (N = 30, 32 and 15, respectively). Feedback regarding its usability was also collected. RESULTS: The English, French and Tamil versions of the ShareDisk demonstrated high test-retest reliability (rs = .69-.98) and were deemed easy to understand and use. CONCLUSION: The ShareDisk is a promising measure of a hitherto unmeasured construct that is easily deployable in settings varying in language and literacy levels. Its clinical utility lies in clarifying stakeholder roles. It can help researchers investigate how stakeholders' roles are perceived and how these perceptions may be shaped by and shape the organization and experience of healthcare across settings.

Experience with Event Timing Does not Alter Emergent Timing: Further Evidence for Robustness of Event and Emergent Timing.

Although, event and emergent timings are thought of as mutually exclusive, significant correlations between tapping and circle drawing (Baer, Thibodeau, Gralnick, Li, & Penhune, 2013 ; Studenka, Zelaznik, & Balasubramaniam, 2012 ; Zelaznik & Rosenbaum, 2010 ) suggest that emergent timing may not be as robust as once thought. We aimed to test this hypothesis in both a younger (18-25) and older (55-100) population. Participants performed one block of circle drawing as a baseline, then six blocks of tapping, followed by circle drawing. We examined the use of event timing. Our hypothesis that acute experience with event timing would bias an individual to use event timing during an emergent task was not supported. We, instead, support the robustness of event and emergent timing as independent timing modes.

"Everyone Has a Role": Perspectives of Service Users With First-Episode Psychosis, Family Caregivers, Treatment Providers, and Policymakers on Responsibility for Supporting Individuals With Mental Health Problems.

Varying perceptions of who should be responsible for supporting individuals with mental health problems may contribute to their needs remaining unmet. A qualitative descriptive design was used to explore these perceptions among key stakeholders. Focus groups were conducted with 13 service users, 12 family members, and 18 treatment providers from an early psychosis intervention program in Montreal, Canada. Individual interviews were conducted with six mental health policy-/decision-makers. Participants across stakeholder groups assigned a range of responsibilities to individuals with mental health problems, stakeholders in these individuals' immediate and extended social networks (e.g., families), macro-level stakeholders with influence (e.g., government), and society as a whole. Perceived failings of the health care system and the need for greater sharing of roles and responsibilities also emerged as important themes. Our findings suggest that different stakeholders should collectively assume certain responsibilities and that systems-level failings may contribute to unmet needs for mental health support.

Who should be responsible for supporting individuals with mental health problems? A critical literature review.

BACKGROUND: Individuals with mental health problems have many support needs that are often inadequately met; however, perceptions of who should be responsible for meeting these needs have been largely unexplored. Varying perceptions may influence whether, how, and to what extent relevant stakeholders support individuals with mental health problems. AIMS: To critically evaluate the literature to determine who different stakeholders believe should be responsible for supporting individuals with mental health problems, what factors shape these perceptions, and how they relate to one another. METHOD: A critical literature review was undertaken. Following an extensive literature search, the conceptual contributions of relevant works were critically evaluated. A concept map was created to build a conceptual framework of the topic. RESULTS: Views of individual versus societal responsibility for need provision and health; the morality of caring; and attributions of responsibility for mental illness offered valuable understandings of the review questions. Creating a concept map revealed that various interrelated factors may influence perceptions of responsibility. CONCLUSIONS: Varying perceptions of who should be responsible for supporting individuals with mental health problems may contribute to unmet support needs among this group. Our critical review helps build a much-needed conceptual framework of factors influencing perceptions of responsibility. Such a framework is essential as these views iteratively shape and reflect the complex divisions of mental healthcare roles and responsibilities. Understanding these perceptions can help define relevant stakeholders' roles more clearly, which can improve mental health services and strengthen stakeholder accountability.

Examination of cultural competence in service providers in an early intervention programme for psychosis in Montreal, Quebec: Perspectives of service users and treatment providers.

AIM: To better understand cultural competence in early intervention for psychosis, we compared service users' and service providers' perceptions of the importance of providers being culturally competent and attentive to aspects of culture. METHODS: At a Canadian early intervention programme, a validated scale was adapted to assess service user (N = 51) and provider (N = 30) perceptions of service providers' cultural competence and the importance accorded thereto. RESULTS: Analyses of variance revealed that the importance of service providers being culturally competent was rated highest by service providers, followed by visible minority service users, followed by white service users. Providers rated themselves as being more interested in knowing about service users' culture than service users perceived them to be. CONCLUSIONS: Service users accorded less import to service providers' cultural competence than providers themselves, owing possibly to varied socialization. A mismatch in users' and providers' views on providers' efforts to know their users' cultures may influence mental healthcare outcomes.

Positive Changes Experienced After a First Episode of Psychosis: A Systematic Review.

OBJECTIVE: Although the negative consequences associated with first-episode psychosis (FEP) have been well investigated, relatively less is known about positive changes that people may experience after FEP. Existing literature is disparate and in need of synthesis. Such a synthesis can inform the design of mental health services that foster strengths, hope, and optimism. The objective of this study was to synthesize the literature on how positive change is experienced after FEP by affected persons and their families and friends and to delineate the individual, social, and structural factors facilitating positive change. METHODS: A librarian-assisted systematic review of quantitative, qualitative, and mixed-methods studies published in English between 1970 and 2015 was conducted. Articles identified from three databases (PubMed, PsycINFO, and Embase) and through additional search strategies were screened. Results sections were open coded and analyzed by using thematic synthesis. RESULTS: Of the 2,777 studies identified, 40 were retained. The synthesis of findings showed that after FEP, service users and their families and friends experienced positive changes at the individual (for example, more insight and clarity), interpersonal (for example, improved relationships), and spiritual levels (for example, greater religiosity). In addition to being facilitated by mental health services, these positive changes were enabled by personal (for example, motivation), social (for example, family support), and spiritual (for example, prayer) factors. CONCLUSIONS: Suffering is a core experience of FEP from which a range of positive changes can follow among service users and their families and friends. It may be beneficial for mental health services to specifically strive to promote these positive changes.

The role of multiple internal timekeepers and sources of feedback on interval timing.

The aim of this experiment was to document the role of multiple internal clock mechanisms and external sources of temporal feedback on reducing timing variability when two fingers tap instead of one (a phenomenon known as the bimanual advantage). Previous research documents a reduction in timed interval variability when two effectors time instead of one. In addition, interval variability decreases with multiple sources of feedback. To date, however, no research has explored the separate roles of feedback and internal timing on the bimanual advantage. We evaluated the bimanual advantage in a task that does not utilise an internal clock (circle drawing). Participants performed both unimanual and bimanual timing while tapping or drawing circles. Both tasks were performed with and without tactile feedback at the timing goal. We document reduced bimanual timing variability only for tasks that utilise internal clock-like timing (tapping). We also document reduced timing variability for timing with greater sensory feedback (tactile vs no-tactile feedback tapping). We conclude that internal clock mechanisms are necessary for bimanual advantage to occur, but that multiple sources of feedback can also serve to improve internal timing, which ties together current theories of bimanual advantage.

Diagnostic stability of first-episode psychotic disorders and persistence of comorbid psychiatric disorders over 1 year.

OBJECTIVE: Diagnostic stability is an important indicator of the reliability and validity of psychiatric diagnoses and has implications in clinical practice and research. While several studies have investigated the diagnostic stability of first-episode psychosis (FEP) disorders, less is known about psychiatric comorbidity in FEP and the persistence of such comorbid conditions over time. Our study aimed to confirm the diagnostic stability of FEP disorders and determine the variation in persistence of comorbid substance use disorders (SUDs), mood disorders, and anxiety disorders over 1 year. METHOD: The Structured Clinical Interview for DSM-IV-TR Axis I Disorders-Patient Edition was conducted at first presentation and repeated after 1 year (or reconstructed) for 214 FEP patients at the Prevention and Early Intervention Program for Psychoses-Montreal. RESULTS: Psychotic disorder diagnoses were retained by 76.2% of patients at 1 year, schizophrenia being the most stable diagnosis (92.1%). Most diagnostic shifts were to schizophrenia and schizophrenia spectrum disorders. Comorbid SUDs, anxiety disorders, and mood disorders persisted for 50.7%, 64.0%, and 16.7% of patients, respectively. Many new cases of each of these disorders also emerged at 1-year follow-up. CONCLUSIONS: These findings demonstrate the stability of primary psychotic disorder diagnoses and greater fluidity of comorbid psychiatric diagnoses, with anxiety disorders persisting as comorbid conditions more than mood disorders and SUDs. These results highlight the importance of repeating a structured diagnostic assessment longitudinally, especially for consideration of comorbid conditions.

Objectif : La stabilité diagnostique est un important indicateur de la fiabilité et de la validité des diagnostics psychiatriques et elle a des implications dans la pratique clinique et la recherche. Bien que plusieurs études aient investigué la stabilité diagnostique du premier épisode des troubles psychotiques (PEP), on en sait moins sur la comorbidité psychiatrique du PEP et sur la persistance de ces affections comorbides avec le temps. Notre étude visait à confirmer la stabilité diagnostique du PEP et à déterminer la variation de la persistance des troubles liés à l'utilisation de substances (TUS), des troubles de l'humeur, et des troubles anxieux comorbides sur 1 an. Méthode : L'entrevue clinique structurée pour les troubles de l'axe I du DSM-IV-TR ­ édition du patient a été menée à la première présentation et répétée après 1 an (ou reconstruite) auprès de 214 patients du PEP au Programme d'évaluation, d'intervention et de prévention des psychoses (PEPP-Montréal). Résultats : Les diagnostics de trouble psychotique étaient retenus par 76,2 % des patients, 1 an après, la schizophrénie étant le diagnostic le plus stable (92,1 %). La plupart des changements de diagnostic se sont faits vers la schizophrénie et les troubles du spectre de la schizophrénie. Les TUS, les troubles anxieux, et les troubles de l'humeur comorbides persistaient chez 50,7 %, 64,0 %, et 16,7 % des patients, respectivement. De nombreux nouveaux cas de ces troubles ont aussi apparus au suivi d'un an. Conclusions : Ces résultats démontrent la stabilité des diagnostics primaires des troubles psychotiques et la plus grande fluidité des diagnostics psychiatriques comorbides, les troubles anxieux persistant davantage comme affections comorbides que les troubles de l'humeur et les TUS. Ces résultats mettent en évidence l'importance de répéter longitudinalement une évaluation diagnostique structurée, surtout pour examiner les affections comorbides.