Best practice guidelines for citizen science in mental health research: systematic review and evidence synthesis.

Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting.

A Mixed Methods Study Examining Citizenship Among Youth With Mental Health Challenges.

Introduction: Multiple stakeholders have recently called for greater research on the barriers to citizenship and community belonging faced by people with mental health challenges. Citizenship has been defined as a person's access to the rights, roles, responsibilities, resources and relationships that help people feel a sense of belonging. Factors that may impact citizenship include financial precarity; intersecting forms of marginalization and oppression (e.g., racism); and the mental health care people receive. Research has yet to examine experiences of citizenship among youth with mental health challenges. To address this gap, this study will examine how youth experience citizenship; predictors of citizenship; how citizenship shapes recovery; and the degree to which youth are receiving citizenship-oriented care. Methods: The research objectives will be evaluated using a multiphase mixed methods research design. Quantitative data will be collected cross-sectionally using validated self-report questionnaires. Qualitative data will be collected using a hermeneutic phenomenological method using semi-structured interviews and focus groups. Analyses: Multiple stepwise regression analyses will be used to determine predictors of citizenship and if of citizenship predict recovery. Pearson correlations will be computed to determine the relationship between participants' perceived desire for, and receipt of citizenship-oriented care. Phenomenological analysis will be used to analyze qualitative data. Findings will then be mixed using a weaving method in the final paper discussion section. Conclusion: Findings from this study may support the development of citizenship-oriented healthcare in Canada.

Citizenship matters: Translating and adapting the Citizenship Measure to Norwegian.

Citizenship is considered intertwined with recovery, and may be a useful perspective for advancing quality of life among marginalised groups. Yet, matters of citizenship among persons with co-occurring substance use and mental health problems are underrepresented both in research and practice. Aims: In order to measure citizenship among persons with co-occurring problems in a Norwegian study, a measure of citizenship was translated from English to Norwegian. The aims of the study were to 1) translate and adapt the Citizenship Measure, developed by Rowe and colleagues at the Yale Program for Recovery and Community Health, to Norwegian, and 2) to assess the internal consistency and convergent validity of the Norwegian translated measure. Methods: The translation process was carried out using forward and back translation procedures. To examine measurement properties, a convenience sample of 104 residents with co-occurring problems living in supported housing completed the measure. Results: Two factors were identified, related to rights, and to relational citizenship. The Norwegian translation of the Citizenship Measure showed high internal consistency and adequate convergent validity. Conclusions: We argue that the measure can be useful in assessing perceived citizenship, and in initiating efforts to support citizenship among persons with co-occurring problems.

Unmet health needs and barriers to health care among people experiencing homelessness in San Francisco's Mission District: a qualitative study.

BACKGROUND: People experiencing homelessness have unique health needs and barriers to medical and behavioral health care (mental health, substance use disorder, and overall well-being) compared to housed people. It remains unclear why many people experiencing homelessness do not access care when community-based homeless health care resources are available at low or no cost. This qualitative study examined perspectives of people experiencing homelessness and staff members at community-based homeless health and service organizations in San Francisco's Mission District on unmet medical and behavioral health needs and barriers to accessing care. METHODS: We conducted 34 interviews between September and November 2020: 23 with people experiencing homelessness and 11 with staff at community-based homeless health and service organizations in the Mission District. Qualitative interviews were transcribed, coded, and analyzed using the Framework Method on NVivo Qualitative Data Analysis Software. RESULTS: Both staff and homeless participants reported unmet and common health needs of mental illness, physical injury and disability, food and nutrition insecurity, and substance use disorder. Barriers to care included negative prior health care experiences, competing priorities, and provider turnover. Recommendations for improving services included building more trust with people experiencing homelessness by training clinic staff to treat patients with respect and patience and expanding clinical outreach and health education programs. CONCLUSIONS: People experiencing homelessness face many different health needs and barriers to care, some of which community-based organizations have the ability to address. These findings can help inform future strategies for homeless health care programs to identify and target the specific unmet health needs and barriers to care of people experiencing homelessness in their communities.

Are personality disorders in bipolar patients more frequent in the US than Europe?

OBJECTIVE: Bipolar patients in the United States (US) compared to those from the Netherlands and Germany (here abbrev. as "Europe") have more Axis I comorbidities and more poor prognosis factors such as early onset and psychosocial adversity in childhood. We wished to examine whether these differences also extended to Axis II personality disorders (PDs). METHODS: 793 outpatients with bipolar disorder diagnosed by SCID gave informed consent for participating in a prospective longitudinal follow up study with clinician ratings at each visit. They completed detailed patient questionnaires and a 99 item personality disorder inventory (PDQ-4). US versus European differences in PDs were examined in univariate analyses and then logistic regressions, controlling for severity of depression, age, gender, and other poor prognosis factors. RESULTS: In the univariate analysis, 7 PDs were more prevalent in the US than in Europe, including antisocial, avoidant, borderline, depressive, histrionic, obsessive compulsive, and schizoid PDs. In the multivariate analysis, the last 4 of these PDs remained independently greater in the US than Europe. CONCLUSIONS: Although limited by use of self report and other potentially confounding factors, multiple PDs were more prevalent in the US than in Europe, but these preliminary findings need to be confirmed using other methodologies. Other poor prognosis factors are prevalent in the US, including early age of onset, more childhood adversity, anxiety and substance abuse comorbidity, and more episodes and rapid cycling. The interactions among these variables in relationship to the more adverse course of illness in the US than in Europe require further study.

Developing and establishing the psychometric properties of the Strathclyde Citizenship Measure: A new measure for health and social care practice and research.

There has been increasing interest and research attention towards citizenship-based practices and care within health and social care settings. A framework for implementing citizenship-based interventions has helped support the participation in society of persons who have experienced major life disruptions. Yet, having ways to measure the impact of citizenship 'in action' within specific socio-cultural contexts has proved challenging. We report on the development of the Strathclyde Citizenship Measure (SCM) which seeks to establish a psychometrically sound measure of citizenship that is relevant to the Scottish context. We outline the three phases of developing the SCM: (1) item generation, (2) item reduction and piloting, and (3) measure validation. Having generated items for the SCM using concept mapping techniques, we piloted it with 407 participants who completed an online survey of a 60-item version of the SCM. The aims were to assess the validity of the items and reduce the number of items using principal components analysis for the final measure. This resulted in a 39 item SCM. We then sought to establish the psychometric properties of this shorter version of the SCM through testing its reliability, convergent, concurrent and discriminant validity. The 39 item SCM was administered online to 280 Scottish residents along with additional measures including the Warwick-Edinburgh Mental Well-being Scale (WEMWBS), the Depression, Anxiety and Stress Scale (DASS21), the Sense of Belonging Instrument (SOBI-A); the Big Five Personality Inventory (Shortened Version; BFI-10) and the Personal Social Capital Scale (PSCS-16). The factor structure and dimensionality of the SCM was examined using exploratory factor analysis and it was found to be reliable and valid. This paper explores the potential for the application of the SCM across health and social care settings and identifies future work to develop citizenship tools to facilitate dialogues about citizenship across health and social care practice settings.

Citizenship, Social Justice and Collective Empowerment: Living Outside Mental Illness.

Citizenship is emerging as one of the world's leading models to shift mental health care from artificial psychiatric settings into more natural community settings by incorporating human rights. This paper describes a four-session roundtable series entitled Citizenship, Social Justice, and Collective Empowerment: Living Outside Mental Illness. These roundtables were part of the New England Mental Health Technology Transfer Center Network (MHTTC). They were built on the conviction that people who have lived experiences of mental health challenges and engaged in making community connections should be at the center of teaching about those experiences. Presenters shared their experiences about how they navigated stigma and discrimination on their way to community inclusion, belonging, and empowerment. The common theme across the series was the citizenship framework. The citizenship framework has inspired people to become involved in an individual and collective dynamic experience that connects them with the 5R's of rights, responsibilities, roles, resources, relationships, and a sense of belonging in society. The outcomes from the discussion on the webinars demonstrated that peer support could be a promising intervention to increase the sense of belonging in the community.

Citizens defining citizenship: A model grounded in lived experience and its implications for research, policy and practice.

Citizenship is gaining currency in health and social care internationally as a way of making sense of the lived experiences of people with major life disruptions who face exclusion, marginalisation and discrimination, but the concept is often contested, poorly defined and understood. This paper charts the development of an empirical model of citizenship within Scotland, UK. A mixed-method, community-based participatory research approach using 10 focus groups (n = 77), concept-mapping exercises (n = 45) and statement clarity and relevant ratings (n = 242) was used to develop a model of citizenship that is grounded in the lived experience of participants, which is absent from current conceptualisations of citizenship. Multidimensional scaling and hierarchical cluster analysis revealed five core domains emerging from our work: 'building relationships', 'autonomy and acceptance', 'access to services and supports', 'shared values and social roles' and 'civic rights and responsibilities' representing the personal meanings of citizenship for participants. We argue that the value of this model is that it is draws upon the personal understandings and experiences of participants who emphasised the 'banal ordinariness' of its core elements. We suggest that the model makes an original contribution by clearly illustrating the practical applicability of citizenship as a concept; thus, enhancing existing theories of citizenship. Our model highlights the interplay between the relational and structural aspects of citizenship and acknowledges the barriers that marginalised groups face in claiming their citizenship rights. It offers a call to action for policy makers and practitioners to set goals that contribute to the social inclusion of those who have experienced major life disruptions.

How to replace a physiotherapist: artificial intelligence and the redistribution of expertise.

The convergence of large datasets, increased computational power, and enhanced algorithm design has led to the increased success of machine learning (ML) and artificial intelligence (AI) across a wide variety of healthcare professions but which, so far, have eluded formal discussion in physiotherapy. This is a concern as we begin to see accelerating performance improvements in AI research in general, and specifically, an increase in competence within narrow domains of practice in clinical AI. In this paper we argue that the introduction of AI-based systems within the health sector is likely to have a significant influence on physiotherapy practice, leading to the automation of tasks that we might consider to be core to the discipline. We present examples of some of these AI-based systems in clinical practice, specifically video analysis, natural language processing (NLP), robotics, personalized healthcare, expert systems, and prediction algorithms. We address some of the key ethical implications of these emerging technologies, discuss the implications for physiotherapists, and explore how the resultant changes may challenge some long-held assumptions about the status of the profession in society.

Observational study investigating Tolerance Of Anticancer Systemic Therapy In the Elderly (TOASTIE): a protocol.

INTRODUCTION: The number of older adults diagnosed with cancer is increasing. Older adults are more likely to have pre-existing frailty, which is associated with greater chemotherapy-related toxicity. Early identification of those at risk of toxicity is important to reduce patient morbidity and mortality. Current chemotherapy toxicity prediction tools including the Cancer and Ageing Research Group (CARG) tool exist but are not in routine clinical use and have not been prospectively validated in a UK population. This study is the first prospective study to investigate the CARG tool in a UK population with cancer. METHODS AND ANALYSIS: Tolerance Of Anticancer Systemic Therapy In the Elderly is a prospective observational study of patients, aged ≥65 years, commencing first-line (any indication) chemotherapy for a solid-organ malignancy. Patients receiving other systemic anticancer agents or radiotherapy will be excluded. The primary objective will be to validate the ability of the CARG score to predict grade 3+ toxicity in this population. Secondary objectives include describing the feasibility of screening for frailty, as well as the prevalance of frailty in this population and assessing patient and clinician perception of chemotherapy toxicity risk. 500 patients will be recruited over a two year period. Baseline assessments will be recorded. At the end of the 6-month follow-up period, toxicity data will be retrospectively collected. A descriptive analysis of the recruited population will be performed. The validity of the CARG model will be analysed using receiver-operating characteristic curves and calculation of the area under the curve (c-statistic). ETHICS AND DISSEMINATION: The study has received ethical approval from the East of Scotland Research Ethics Service 20/ES/0114. Results will be reported in peer-reviewed scientific journals and disseminated to patient organisations and media.

Recovery-Oriented Systems of Care: A Perspective on the Past, Present, and Future.

This paper provides a perspective on the recent concept of recovery-oriented systems of care with respect to its origins in the past and its status in the present, prior to considering directions in which such systems might move in the future. Although influential in practice, this concept has yet to be evaluated empirically and has not been the object of a review. Recovery-oriented systems of care emerged from the efforts of persons with mental health and/or substance use disorders who advocated for services to go beyond the reduction of symptoms and substance use to promote a life in the community. Subsequent efforts were made to delineate the nature and principles of such services and those required of a system of such care. Coincident with the U.S. Substance Abuse and Mental Health Services Administration dropping reference to behavioral health in its revised definition of recovery, confusions and limitations began to emerge. Recovery appeared to refer more to a process of self-actualization for which an individual is responsible than to a process of healing from the effects of a behavioral health condition and associated stigma. In response, some systems are aiming to address social determinants of behavioral health conditions that transcend the scope of the individual and to develop a citizenship-oriented approach to promote community inclusion.

A Multicentre Retrospective Analysis of Toxicity in 6-weekly Versus 3-weekly Pembrolizumab.

Pembrolizumab is an anti-programmed cell death protein 1 immune checkpoint inhibitor with a dosing schedule of 200 mg 3 weekly (q3w). Dose of 400 mg 6 weekly (q6w) was approved based on simulation of dose/exposure relationships and predicted no difference in toxicity. We present real-world comparative toxicity data. Patients receiving pembrolizumab for any indication between March and December 2019 were included across 3 regional centers. Toxicity data were collected retrospectively using Common Terminology Criteria for Adverse Events, v5.0. Clinically significant immune-related adverse events (CSirAE) were defined as immune-related events and grade ≥3 rash. Data were analyzed using incidence (Poisson distribution) and incidence ratio. Overall, 63 patients started on q6w and 110 patients received q3w. There were 3 (q6w) and 8 (q3w) grade 3-5 CSirAE and 13 (q6w) and 31 (q3w) grade 1-2 CSirAE. The incidence of grade 3-5 CSirAE was 0.77 (95% confidence interval: 0.16-2.24) per 100 patient-months in q6w and 0.68 (95% confidence interval: 0.29-1.34) per 100 patient-months in q3w (incidence ratio of 1.13; 95% confidence interval: 0.19-4.70). Low-grade toxicity was common (fatigue, pruritus, rash; q6w 46%, q3w 42%). Incidence of CSirAEs was low but low-grade toxicity was common. Despite a limited number of events, there is the suggestion that the q6w schedule has a similar toxicity profile to q3w and therefore consideration should be given to the reduced burden to patients and health services when deciding treatment.

"The biggest barrier is to inclusion itself": the experience of citizenship for adults with mental health problems.

BACKGROUND: Citizenship has been promoted within mental health for several decades however, its application in the field of mental health policy and practice is relatively novel. The voices of people who experience mental health problems (MHPs) are often absent in ongoing discourses about citizenship. AIMS: To explore how adults with experience of MHPs and other life disruptions identify potential barriers to citizenship. METHOD: A community based participatory research approach was adopted with peer researchers. Six focus groups (N = 40) using semi-structured interviews were conducted, consisting of participants who had experience of MHPs and other life disruption(s) within the last 5 years. The focus groups were audio recorded, transcribed verbatim and analysed in NVIVO using a thematic approach. RESULTS: Three major themes associated with participants lived experiences of barriers to citizenship were identified: 'stigmatisation (internal & external) creates further divide'; 'being socially excluded leads to isolation'; and 'a sense of difference (as perceived by the self and others)'. CONCLUSIONS: Those who have experienced major life disruption(s) face multi-level barriers to citizenship. An awareness of such barriers has important implications for mental health research, policy and practice. Citizenship-oriented implementation strategies that aim to address multi-level barriers merit further investigation.

Age-associated changes in the circulating human antibody repertoire are upregulated in autoimmunity.

BACKGROUND: The immune system undergoes a myriad of changes with age. While it is known that antibody-secreting plasma and long-lived memory B cells change with age, it remains unclear how the binding profile of the circulating antibody repertoire is impacted. RESULTS: To understand humoral immunity changes with respect to age, we characterized serum antibody binding to high density peptide microarrays in a diverse cohort of 1675 donors. We discovered thousands of peptides that bind antibodies in age-dependent fashion, many of which contain di-serine motifs. Peptide binding profiles were aggregated into an "immune age" by a machine learning regression model that was highly correlated with chronological age. Applying this regression model to previously-unobserved donors, we found that a donor's predicted immune age is longitudinally consistent over years, suggesting it could be a robust long-term biomarker of humoral immune ageing. Finally, we assayed serum from donors with autoimmune disease and found a significant association between "accelerated immune ageing" and autoimmune disease activity. CONCLUSIONS: The circulating antibody repertoire has increased binding to thousands of di-serine peptide containing peptides in older donors, which can be represented as an immune age. Increased immune age is associated with autoimmune disease, acute inflammatory disease severity, and may be a broadly relevant biomarker of immune function in health, disease, and therapeutic intervention.

Convergent and Concurrent Validity between Clinical Recovery and Personal-Civic Recovery in Mental Health.

Several instruments have been developed by clinicians and academics to assess clinical recovery. Based on their life narratives, measurement tools have also been developed and validated through participatory research programs by persons living with mental health problems or illnesses to assess personal recovery. The main objective of this project is to explore possible correlations between clinical recovery, personal recovery, and citizenship by using patient-reported outcome measures. All study participants are currently being treated and monitored after having been diagnosed either with (a) psychotic disorders or (b) anxiety and mood disorders. They have completed questionnaires for clinical evaluation purposes (clinical recovery) will further complete the Recovery Assessment Scale and Citizenship Measure (personal-civic recovery composite index). Descriptive and statistical analyses will be performed to determine internal consistency for each of the subscales, and assess convergent-concurrent validity between clinical recovery, citizenship and personal recovery. Recovery-oriented mental health care and services are particularly recognizable by the presence of Peer Support Workers, who are persons with lived experience of recovery. Upon training, they can personify personalized mental health care and services, that is to say services that are centered on the person's recovery project and not only on their symptoms. Data from our overall research strategy will lay the ground for the evaluation of the effects of the intervention of Peer Support Workers on clinical recovery, citizenship and personal recovery.

Little Agreement on Treating Residual Bipolar Disorder Symptoms in a Child.

BACKGROUND: There is a paucity of studies on treatment of childhood-onset bipolar disorder and its associated comorbidities, which leads to a wide diversity of opinion on choice and sequencing of treatment options. METHODS: From December 2018 to January 2019, a graphic depiction of medications and weekly ratings of symptoms of mania, depression, anxiety, attention-deficit/hyperactivity disorder (ADHD), and oppositional behavior that parents had rated on their 9-year-old child over a period of several years was sent to experts in child and adult bipolar disorder. These responding medical doctors (MDs, 8 child and 18 adult psychiatrists) rated a comprehensive list of medications that they would choose (and with what priority) to treat the child's now improved mood (mania and depression) but continued mild to moderate symptoms of anxiety, ADHD, and oppositional behavior. RESULTS: In the whole group, the drugs most highly endorsed were lamotrigine: 69%, lithium: 62%, lurasidone: 62%, quetiapine: 54%, aripiprazole: 46%, and valproate: 42%. Among the antidepressants, 38% endorsed a selective serotonin reuptake inhibitor, 12% a serotonin-norepinephrine reuptake inhibitor, and 27% bupropion. Of the child MDs, 75% suggested increasing the 1-mg dose of risperidone, while few adult MDs suggested this. Conversely, 56% of the adult MDs suggested using valproate, while only 1 child MD did so. There was little consensus on how to manage ADHD symptoms unresponsive to methylphenidate 36 mg/d. How these treatment options were sequenced also varied widely. CONCLUSIONS: There was wide variation in suggestions on to how to treat persistent symptoms of anxiety, ADHD, and oppositional behavior in a child whose mania and depression had been brought under good control. We surmise that this great diversity in recommendations among experts in child and adult bipolar disorder stems at least partially from inadequate literature on treatment and that a new emphasis on funding and conducting studies on efficacy and effectiveness is needed.

Prostate-specific antigen (PSA) bounce following salvage radiotherapy to the prostate bed in a patient with prostate cancer post-prostatectomy.

We present a case of prostate-specific antigen (PSA) bounce in a 76 year old man who underwent salvage radiotherapy to the prostate bed following biochemical relapse 6 years post-radical prostatectomy for a T2N0 Gleason grade 3 + 3 prostate adenocarcinoma; 10 months following completion of salvage radiotherapy for biochemical PSA recurrence of 0.2 µg/L. Following undetectable results (<0.03 µg/L), his PSA rose from 0.04 to 0.3 µg/L with no evidence of prostate cancer recurrence before returning to undetectable levels without medical intervention. This PSA 'bounce phenomenon' is well described following radiotherapy to an intact prostate and has been proposed to be the result of a late fibrotic effect on irradiated prostate tissue. To our knowledge, this is the first case published describing the effect in the post-prostatectomy setting. It highlights the importance of serial PSA monitoring to confirm biochemical relapse before committing the patient to androgen deprivation therapy (with its inherent risks and side effects).

Relationship of comorbid personality disorders to prospective outcome in bipolar disorder.

Introduction There is a high incidence of Axis II personality disorders (PDs) in patients with bipolar illness, but their influence on the prospectively measured course of bipolar disorder has been less well explicated. Methods 392 outpatients with bipolar disorder gave informed consent, completed the PDQ4 99 item personality disorder rating, and where clinically rated during at least one year of prospective naturalistic treatment. They were classified as Well on admission (N = 64) or Responders (N = 146) or Non-responders (N = 182) to treatment for at least six months. Results Patients who were positive for PDs were very infrequently represented in the category of Well on admission. In addition, patients with borderline, depressive, and schizoid PDs were significantly more likely to be Non-responders compared to Responders upon prospective naturalistic treatment in the network. Conclusions Patients with bipolar disorder and comorbid PDs were in general less likely to be Well from treatment in the community at network entry or to be a Responder to prospective treatment in the network. Therapeutic approaches to patients with PDs deserve specific study in an attempt to achieve a better long-term course of bipolar disorder.

Double jeopardy in the United States: Early onset bipolar disorder and treatment delay.

BACKGROUND: Evidence is emerging that early onset bipolar disorder and the duration of the delay to first treatment are both risk factors for poor treatment outcome. We report on the incidence and implications of these two risk factors in patients from the United States (US) versus Europe. METHODS: Age of onset and age at first treatment for depression or mania was assessed in 967 outpatients with bipolar disorder who gave informed consent for participation and filling out a detailed questionnaire. Age at onset and treatment delay were compared in the 675 patients from the US and 292 from the Netherlands and Germany (abbreviated as Europe). Both were then graphed and analyzed. RESULTS: Age of onset of bipolar disorder was earlier in the US than in Europeans by an average of 6-7 years with similar results in those with first onsets of depression or of mania. Delay to first treatment was strongly inversely related to age of onset and was twice as long in the US than in Europe, and especially different for mania in adolescents. The longer delay to treatment in the US was not solely due to earlier age of onset. CONCLUSIONS: Treatment delay is a remedial risk factor and could be shortened with better recognition of the higher incidence of early onset bipolar disorder in the US, which also associated with more genetic and environmental vulnerability factors compared to Europe. New treatment and research initiatives are needed to address these liabilities so that children with bipolar achieve more positive long-term outcomes.