Home environment of 11-year-old children born to parents with schizophrenia or bipolar disorder - a controlled, 4-year follow-up study: The Danish High Risk and Resilience Study - VIA 11.

BACKGROUND: The home environment has a major impact on child development. Parental severe mental illness can pose a challenge to the home environment of a child. We aimed to examine the home environment of children of parents with schizophrenia or bipolar disorder and controls longitudinally through at-home assessments. METHODS: Assessments were conducted within The Danish High Risk and Resilience Study, a nationwide multi-center cohort study of children of parents with schizophrenia or bipolar disorder and population-based controls. The level of at-home stimulation and support was measured at age 7 (N = 508 children) and age 11 (N = 430 children) with the semi-structured HOME Inventory. Results from the 11-year follow-up study were analyzed and compared with 7-year baseline results to examine change across groups. RESULTS: At age 11, children of parents with schizophrenia and bipolar disorder had lower levels of stimulation and support than controls (mean (s.d.) = 46.16 (5.56), 46.87 (5.34) and 49.25 (4.37) respectively, p < 0.001). A higher proportion of children with parental schizophrenia or bipolar disorder lived in inadequate home environments at age 11, compared with controls (N (%) = 24 (15.0), 12 (12.2) and 6 (3.5) respectively, p < 0.003). The changes in home environment scores did not differ across groups from age 7 to age 11. CONCLUSIONS: Assessed longitudinally from the children's age of 7 to 11, children of parents with schizophrenia or bipolar disorder had lower levels of stimulation and support in their homes than controls. Integrated support which can target practical, economic, social and health issues to improve the home environment is indicated.

Experiences of helplessness and fear among caregivers diagnosed with severe mental illness and co-caregivers: The Danish High Risk and Resilience Study - VIA 7.

This study investigates indicators of disorganized caregiving among caregivers of children who have a familial predisposition of schizophrenia spectrum psychosis (SZ) or bipolar disorder (BP), and whether indicators of disorganized caregiving are associated with the caregivers' and children's level of functioning as well as the children's internalizing and externalizing behavior problems. Indicators of disorganized caregiving were assessed with the Caregiving Helplessness Questionnaire (CHQ). Level of functioning was evaluated using the Children's Global Assessment Scale and the Personal and Social Performance Scale, while dimensional psychopathology were measured with the Child Behavior Checklist. 185 caregivers belonging to a SZ combined group (i.e., SZ-I + SZ co-caregiver), 110 caregivers to a BP combined group (i.e., BP-I + BP co-caregiver), and 184 caregivers to a population-based control group provided data on CHQ. Having a history of SZ or BP or being a co-caregiver to a parent with SZ or BP was associated with higher levels of experiences of helplessness and fear. Higher scores on helplessness were associated with lower level of functioning among caregivers and children and with children having externalizing/internalizing behavior problems. These results emphasize the need for interventions addressing indicators of disorganized caregiving in families with SZ or BP.

Cognitive functioning following discontinuation of antipsychotic medication. A naturalistic sub-group analysis from the OPUS II trial.

BACKGROUND: The effect of antipsychotics medication on cognitive functioning in patients diagnosed with schizophrenia is poorly understood. Some studies of second generation antipsychotics indicated that they improved cognitive functioning while other studies have found that they decrease the level of cognitive functioning. METHOD: We included patients with schizophrenia who were in treatment with antipsychotics 1.5 years (baseline) after initiation of treatment and followed them up 3.5 years later (n = 189). At follow-up 60 (32%) had discontinued their antipsychotic treatment and 129 (68%) were still taking antipsychotics. Using the Brief Assessment of Cognition in Schizophrenia (BACS) we assessed cognition at baseline and follow-up. RESULTS: The patients who discontinued their medication had a higher level of cognitive functioning in all domains at baseline, as well as Global cognitive function [mean z-score -1.50 (s.d. 1.24) v. -2.27 (s.d. 1.30), p = 0.00015]. After controlling for relevant confounders those who discontinued antipsychotic medication improved significantly more than those who remained on antipsychotic medication during the course of the follow-up on the Token Motor task [estimated mean change difference -0.46 (95% CI -0.89 to -0.04)], the Speed of Processing Domain [estimated mean change difference -0.38 (95% CI -0.68 to -0.08)] and global cognition [estimated mean change difference -0.36 (95% CI -0.66 to -0.07)]. CONCLUSION: Due to the naturalistic design, we cannot conclude on the direction of the relationship between antipsychotics and cognition. There is no evidence that discontinuation of medication had a negative effect on cognitive functioning. Rather, we found that that discontinuation of medication was associated with better cognitive functioning.

Stigma experienced as worse than symptoms of schizophrenia: A qualitative study about The OpusPanel.

AIM: Former patients and relatives of people who have received treatment in OPUS, a Danish specialized early intervention for first episode psychosis, have since 2009 worked to reduce stigma and increase hope related to schizophrenia and psychosis. They established The OpusPanel to share their own stories of living with an invisible disorder with new patients, health care professionals, politicians, and members of the public. The impact of The OpusPanel on stigma has not previously been explored or evaluated. The article aims to evaluate and gain an in-depth understanding of The OpusPanel's anti-stigma impact. METHODS: In a qualitative design, 27 people with different affiliations to The OpusPanel were interviewed using semi-structured interview guides to capture their individual experiences of listening to, interacting with, or being part of The OpusPanel. Interview guides were constructed following a focus group interview with members of The OpusPanel. Analysis of the multi-perspectival dataset was facilitated through an interpretative phenomenological approach with investigator triangulation. Preliminary results were returned to the focus group members to ensure relevance and accuracy. RESULTS: The study found that almost all interviewees described a sense of hopefulness and decreased stigma after having experienced a member from The OpusPanel present their story or participating as panel members themselves. CONCLUSION: The findings suggest that attending presentations or participating in The OpusPanel reduces stigmatizing views about others or oneself. The study may inform The OpusPanel and similar initiatives for challenging stigma related to schizophrenia or psychosis.

Self-reported reasons for discontinuation or continuation of antipsychotic medication in individuals with first-episode schizophrenia.

AIM: Many individuals with schizophrenia discontinue initially prescribed antipsychotics. Knowledge on reasons for discontinuation among individuals with first-episode schizophrenia is sparse. We aimed to describe reasons for discontinuation and continuation, differences between individuals discontinuing and continuing, and factors predicting reasons for discontinuation or continuation. METHODS: This was a prospective cohort study with a post hoc design. Individuals with first-episode schizophrenia were included from early intervention teams in Denmark from 2009-2012. Sociodemographic and clinical variables were collected at baseline and reasons for discontinuation and continuation of antipsychotics were assessed at 3.5-year follow-up. RESULTS: Among 215 patients, 76 reported reasons for discontinuation and 139 for continuation. The most frequent reasons for discontinuation were "side effects" and "patient believed he/she no longer needed the medication because he/she was now better". The most frequent reasons for continuation were "benefits for positive symptoms" and "another person told them to". Individuals who discontinued antipsychotics were at baseline younger, had longer DUP, less negative symptoms, better social function, lower compliance, higher self-belief of coping, and fewer used antipsychotics compared to those continuing antipsychotics. CONCLUSIONS: The effect of antipsychotics is the main reason to continue, whereas side effects were the main reason to discontinue. Knowledge of reasons to discontinue or continue is helpful in shared decision-making, identifying individuals with high odds of discontinuation, improving adherence, and helping with safe discontinuation.

International application of standards for health care quality, access and evaluation of services for early intervention in psychotic disorders.

AIM: Standards for health care quality, access and evaluation of early intervention in psychosis services are required to assess implementation, provide accountability to service users and funders and support quality assurance. The aim of this article is to review the application of standards in Europe and North America. METHODS: Descriptive methods will be used to illustrate the organizational context in which standards are being applied and used, specific measures being applied and results so far. RESULTS: Both fidelity scales and quality indicators of health care are being used. Fidelity scales are being applied in Australia, Canada, Denmark, Italy and United States. In England, quality indicators derived from the National Institute for Health and Care Excellence guidance are being used. CONCLUSION: In the last 4 years, significant progress has been made in the development and application of measures that assess quality and access to evidence-based practices for early intervention in psychosis services. This represents an important step towards providing accountability, improving outcomes and service user experience. The methods used allow for comparison between the services that are assessed with the same methods, but there is a need to compare the different methods. Further research is also required to explore links between quality of care and outcomes for community mental health services that deliver early intervention in psychotic disorders.

Development of a fidelity scale for Danish specialized early interventions service.

BACKGROUND: The efficacy of the Specialized Early Intervention (SEI) treatment in Denmark, the OPUS treatment, has in a randomized clinical trial proved to be very effective compared to treatment as usual, and the dissemination of SEI services is increasing in Denmark. A prerequisite for upholding positive effects along with creating new teams and preserving critical components is to ensure fidelity to the model. Currently there is no Danish fidelity scale for SEI services. AIM: To establish a fidelity scale for SEI teams, in a brief and easily manageable form, for the use of evaluating and assessing the critical components in Danish SEI services. METHOD: We identified essential evidence-based components of SEI services internationally and interviewed experts from five Danish SEI teams, using an adapted version of the Delphi Consensus method. RESULTS: An 18-point fidelity scale was constructed. The scale was divided into two dimensions: one relating to the structure of the SEI team and one relating to the character and content of the SEI treatment. Each component can be rated either 1 or 0 (1 point = fulfilling the requirements for the components; and 0 point = the requirements were not met). The maximum score was a total of 18 points with 5 of the components being mandatory. CONCLUSION: The development of the fidelity scale is an important tool for securing the quality of SEI treatment in Denmark.

Programme fidelity of specialized early intervention in Denmark.

AIM: Specialized early intervention (SEI) treatment in meta-analysis has proven to be effective, compared to usual treatment, in treating first-episode psychosis, and the dissemination of SEI services is increasing. A prerequisite for upholding positive effects is to ensure fidelity to the treatment concept once tested. The aim of this study was to map programme fidelity of SEI teams in Denmark by testing a newly developed fidelity scale. METHODS: The 18-item SEI fidelity scale was assessed by visiting SEI teams in person. The scale is divided into 2 dimensions: one concerning the structure and the other concerning the character and content of the treatment. Interviews were conducted with team leaders, patients and members of the staff, and team conferences were observed. Satisfactory fidelity can be obtained at 2 levels: an elite level and an adequate level. RESULTS: In total, 96% (n = 22) of the Danish SEI teams participated in the fidelity study. An elite fidelity score was achieved by 32% of the teams, scoring 15 or 16 on the 18-point scale; 27% reached adequate level. With regard to the structural domain of the scale, we found variation among the teams. CONCLUSIONS: The multimodal approach was found to be very efficient in evaluating elements critical to SEI teams in Denmark. A low score on the structural domain could, in the long term, lead to an inability to maintain a well-functioning team and provide high-quality treatment.

Fidelity scales and performance measures to support implementation and quality assurance for first episode psychosis services.

AIM: The purpose of this paper is to review fidelity and outcome measures which can be used to support broad implementation of first episode psychosis services and ensure quality of existing services. First episode psychosis services use a combination of evidence-based practices to improve the outcome of a first episode of psychosis and the early stages of schizophrenia. Now that there is an established international evidence base to show that they are effective, efforts are being made to make such services widely available as a routine part of health care. METHODS: We provide an overview of the literature from the perspective of an expert task force that was commissioned to report to the board of the International Early Psychosis Association IEPA. First, we examined the evidence-based components that underpin first episode psychosis services and identified common elements. Next, we reviewed the availability of fidelity measures and outcome indicators, finally we reviewed how broadly these services are delivered internationally, and the barriers to ensuring broad access to quality services. RESULTS: There is a growing consensus about the elements required to deliver effective services. Fidelity scales and performance measures are available to assess quality, access, and outcome. First episode psychosis services are variably offered in high-income countries and rarely with attention to access and quality of services. Several strategies to promote implementation are identified. CONCLUSIONS: Fidelity scales and outcome measure are valuable resources to support widespread implementation and quality assurance for first episode psychosis services.

The Danish High Risk and Resilience Study-VIA 11: Study Protocol for the First Follow-Up of the VIA 7 Cohort -522 Children Born to Parents With Schizophrenia Spectrum Disorders or Bipolar Disorder and Controls Being Re-examined for the First Time at Age 11.

Introduction: Offspring of parents with severe mental illness have an increased risk of developing mental illnesses themselves. Familial high risk cohorts give a unique opportunity for studying the development over time, both the illness that the individual is predisposed for and any other diagnoses. These studies can also increase our knowledge of etiology of severe mental illness and provide knowledge about the underlying mechanisms before illness develops. Interventions targeting this group are often proposed due to the potential possibility of prevention, but evidence about timing and content is lacking. Method: A large, representative cohort of 522 7-year old children born to parents with schizophrenia, bipolar disorder or controls was established based on Danish registers. A comprehensive baseline assessment including neurocognition, motor functioning, psychopathology, home environment, sociodemographic data, and genetic information was conducted from January 1, 2013 to January 31, 2016. This study is the first follow-up of the cohort, carried out when the children turn 11 years of age. By assessing the cohort at this age, we will evaluate the children twice before puberty. All instruments have been selected with a longitudinal perspective and most of them are identical to those used at inclusion into the study at age 7. A diagnostic interview, motor tests, and a large cognitive battery are conducted along with home visits and information from teachers. This time we examine the children's brains by magnetic resonance scans and electroencephalograms. Measures of physical activity and sleep are captured by a chip placed on the body, while we obtain biological assays by collecting blood samples from the children. Discussion: Findings from the VIA 7 study revealed large variations across domains between children born to parents with schizophrenia, bipolar and controls, respectively. This study will further determine whether the children at familial risk reveal delayed developmental courses, but catch up at age 11, or whether the discrepancies between the groups have grown even larger. We will compare subgroups within each of the familial high risk groups in order to investigate aspects of resilience. Data on brain structure and physical parameters will add a neurobiological dimension to the study.