The effectiveness of early psychosis programming for young women: a systematic review protocol

Centers conducting the review University of Manitoba and Queen's Joanna Briggs Collaboration for Patient Safety: a Collaborating Centre of the Joanna Briggs Institute Review question/objective The aim of this systematic review is to synthesize the best available evidence on the effectiveness of early psychosis programming for young adult women (aged 18–35 years) living with a psychotic illness. The specific review question is: What is the evidence for the effectiveness of early psychosis programming for young women living with a psychotic illness? Background Psychotic illnesses, characterized by pathological changes to cognition (e.g. delusional and paranoid thinking), emotion (e.g. social withdrawal and apathetic affect), and perception (e.g. hallucinations) during acute phases of illness,1,2 are typically first diagnosed in their late teens and early twenties in young men, and in the late twenties and early thirties in young women. They are complex, potentially chronic, mental illnesses and affect about 2% of the population, with men and women affected in equal numbers over the trajectory of the illness. Psychotic illnesses, referred to as “schizophrenia spectrum disorders” in DSM-5, include: schizophrenia which is normally diagnosed after continuous signs of disturbance for at least six months,1,2 schizoaffective disorders (psychotic symptoms with a strong mood component), and psychotic episodes of undetermined etiology and course. Initially and in the prodromal period, the illnesses can present with a variety of vague and non-specific symptoms. This, compounded by the societal stigma associated with mental illness, can result in a delay in diagnosis from between six months and two years after the first appearance of symptoms.3 As the duration of untreated psychosis increases, there is an increased risk of poorer outcomes, including impaired quality of life and social functioning. Additionally, the danger of self-harm, aggressive behavior and suicide attempts may lead to the need for police involvement and compulsory (involuntary) treatment.3 Research has suggested that it is possible to alter the severity and outcome of a psychotic illness if treated early and aggressively, which has led to a proliferation of programs that encourage early identification, multimodal treatment, and ongoing involvement with mental health services.4–6 Whilst there has been an increasing concern for the psychosocial needs of these young people, these programs remain largely focused on the control and reduction of symptoms. The psychosocial needs that arise as a result of the social stigma related to psychotic illness are secondary in these programs, if addressed at all. It is well-known that psychoses affect men and women differently, both biologically and psychosocially, with young women experiencing a different constellation of symptoms7–9 and appraising their life circumstances very differently, when compared with men.10,11 However, the specific needs of young women are not typically presented separately in the data in this emerging literature.11–13 Current literature on first episodes of psychosis follows this pattern, typically sampling either young men alone14,15 or “young people”, with young women frequently representing half or less of the sample and not presented separately in the data.11–13,17 Although there is much to be learned from this literature, it has been argued that, because the relationship between gender and psychotic illness may potentially account for the differences in presentation of the illness and illness trajectory between men and women,18,19 what applies to young men cannot be assumed to apply to young women. Nor can men and women be “lumped together” with the implication that the relevant research necessarily reflects the experiences of “all young people”. When young people are interviewed about generic services, there is a lack of consideration for the issue that what may be appropriate for young men (e.g. activity-based interventions)14 may not be appropriate for young women. Also not considering gender differences in the development of intervention programs may deter women from attending for reasons of personal comfort and perceived safety (Manitoba Schizophrenia Society, personal communication). Studies which have evaluated early intervention and prevention programming with some component of sex/gender analysis have revealed small proportions of women in the samples, usually constituting around 15 to 25%.11–13 While the difference in attendance rates may be a reflection of the difference in incidence rates to some degree, it may also suggest that the design of the programs is not meeting the needs of young women. Studies of interventions designed for young women alone have not yet appeared in the literature. To date, early intervention programs are not typically designed with attention given to gender differences. As women's needs differ from those of men's, we are unable to determine if early intervention programs work well for women as distinct from men. This systematic review will concentrate on early intervention studies that have reviewed the efficacy of early psychosis programs (and have separated the data from participants by gender) to determine if there is a difference between the success of programs for men versus women. This search will focus on quantitative measures such as quality of life, symptom relief and management, relapse and readmission, vocational function, and service use and satisfaction. In order to confirm that no other systematic review has been published relating to the effectiveness of early psychosis programming for young women, a preliminary literature search was conducted. The following electronic databases were searched and no current or planned review was found related to this topic: JBI Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews, PROSPERO, CINAHL, PubMed, and Scopus. Grey literature was also searched; however, no systematic review addressing the effectiveness of early psychosis programming for young women with psychosis as defined herein was located. A systematic review that examines the effectiveness of early psychosis programming for young women will inform the development of such programs ensuring that the needs of young women can be taken into account when designing such programs. Inclusion criteria Types of participants This review will consider studies that include young women between the ages of 18 and 35 (inclusive), who are living with a psychotic illness and have been enrolled in a program specifically designed for treatment of early symptoms of psychotic illness. Psychotic illness will include schizophrenia spectrum disorders: schizophrenia, schizoaffective disorder, delusional disorder, brief psychotic disorder, psychosis not specified, and schizophreniform disorder. Studies that address serious mental illness and include women with schizophrenia spectrum disorders in the sample will be included. Types of intervention(s)/phenomena of interest This systematic review will concentrate on early psychosis intervention studies that have reviewed the efficacy of early psychosis programs (and have separated the data from participants by gender) to determine the level of evidence of effectiveness for women as distinct from effectiveness for the whole sample which includes men. Early psychosis programming includes clinical interventions (e.g. pharmacologic, behavioral, psychological, vocational and family intervention) designed specifically to treat those individuals within the first five years after diagnosis with a psychotic disorder.11 Studies examining programs treating prodromal syndromes will be excluded. Types of outcomes This review will focus on quantitative outcome measures for women such as quality of life, symptom relief and management, relapse and readmission, vocational function, and service use and satisfaction in a group receiving intervention versus a wait-list or “treatment as usual” control group. Types of studies This review will consider both experimental and epidemiological study designs including randomized controlled trials, non-randomized controlled trials, quasi-experimental, before and after studies, prospective and retrospective cohort studies, case control studies, and analytical cross-sectional studies. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. Studies published from 1995 will be considered for inclusion in this review as the mid-1990s saw a major philosophical shift from thinking about psychosis as a debilitating chronic illness to one from which an individual may recover and live a fulfilling life.20 The databases to be searched include: CINAHL MEDLINE PsycINFO Embase Web of Science Scopus Women's Studies International Sociological Abstracts Social Services Abstracts Social Work Abstracts ProQuest Dissertations & Theses A&I The search for unpublished studies will include: Conference proceedings, dissertations, grey literature and the websites of relevant organizations. Initial keywords to be used will be: Early psychosis programs; effectiveness; women Initial keywords will be a combination of Medical Subject Headings (MeSH) and keywords, some of which will be truncated (*) to account for variant endings. The keywords will reflect the three main concepts in the question. Terms related to psychosis Schizophrenia and Disorders with Psychotic Features [MeSH] OR psychosis OR psychoses OR psychotic OR schizophrenia OR schizoaffective OR hallucinate* OR delusion* Terms related to experiences Mental Health Services [MeSH] OR experience* OR perception* OR perspective* OR relationship* OR service* OR program* Terms related to women Sex Factors [MeSH] OR women OR gender Assessment of methodological quality Quantitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Data extraction Quantitative data will be extracted from papers included in the review using the standardized data extraction tools from JBI-MAStARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Quantitative papers will, where possible be pooled in statistical meta-analysis using JBI-MAStARI. All results will be subject to double data entry. Effect sizes expressed as odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard Chi-square and also explored using subgroup analyses based on the different quantitative study designs included in this review. Where statistical pooling is not possible the findings will be presented in narrative form including tables and figures to aid in data presentation where appropriate. Conflicts of interest There are no conflicts of interest to declare. Acknowledgements We acknowledge the Manitoba Centre for Nursing and Health Research for their support of this work.

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