Factors affecting withdrawal and donation attrition in the brains for dementia research cohort.

OBJECTIVES: To measure two forms of attrition in a cohort of volunteer brain donors: Withdrawal during life and non-donation at death. To test whether cognitive impairment independently predicts attrition. METHOD: Attrition rates were calculated for all registered participants and for all brain donors who had completed a baseline and follow-up assessment of cognition, health, and lifestyle. Attrition reasons were described, and attrition rates were compared by gender, age group, and cognitive status. Multivariate logistic regression was used to identify the factors which independently predicted during life and at death. RESULTS: A total of 3276 brain donors registered and 2307 (70.4%) remained in the cohort. Attrition rate overall was 5.9% for withdrawal and 13.8% for donation. Family disagreement and the brain bank not being informed of participant death were the most common reasons for withdrawal and donation attrition. Withdrawal was associated with having cognitive impairment (OR 2.0 95% CI 1.1-3.5), increased age (OR 3.1 95% CI 1.4-6.9), and lower education (OR 1.8 95% CI 1.2-2.8). Participants exhibiting cognitive decline between assessments were more likely to withdraw (OR 4.9 95% CI 1.7-13.6). Participants living alone were almost twice as likely to die without donating (OR 1.9 95% CI 1.1-3.3). CONCLUSIONS: Attrition rates were relatively low, and consistent with other studies cognitive impairment, increased age, and less education predicted study withdrawal. Deaths of participants living alone were less likely to result in donation. Tailored, regular retention practices aimed at resolving family disagreement regarding donation decisions are required.

A Descriptive Analysis of EtOH Intoxication in our Latino Trauma Patients: An Indication for a Preventive Program.

We sought to determine patterns of injury in our Latino trauma community targeting alcohol (EtOH) intoxication as an influential variable. With the information gained in our culturally specific and culturally sensitive trauma community, we can use the information to fine-tune our trauma preventive medicine programs. Trauma injuries are the third largest contributor to racial disparities in the United States. Alcohol is involved in approximately half of all trauma admissions to trauma centers around the country. Some investigators have shown that Latinos have higher rates of high-risk drinking, and this factor is independently associated with mortality after trauma. This study is a retrospective review of 524 Latino blunt and penetrating trauma admissions for years (2012-2014). Electronic medical records with the hospital trauma registry charts were evaluated. The trauma registry database included age, gender, EtOH, mechanism of injury, location, insurance, and disposition. Statistical significance was used with chi-square test. Our results show a predominantly male population with falls being the primary mechanism of injury. Intoxicated injuries occurred mostly at bars/clubs, but a substantial amount occurred at the workplace. Despite having a majority of the injuries occurring with patients that have Medicaid or Charity Care insurance, a certain amount of the alcohol-related injuries had private insurance. Many of our Latino trauma patients are still suffering from trauma-related EtOH intoxication. With the information obtained from our project, we will be able to fine-tune and target our trauma preventive medicine program to provide education for our inner-city Latino community of EtOH intoxication-related trauma injuries.

A pilot study of potential brain donor satisfaction and attitudes towards telephone assessment.

OBJECTIVE: Test the feasibility of assessing cognition, psychiatric symptoms and daily living skills of potential brain donors by telephone and compare satisfaction and attitudes across telephone and face-to-face assessment. METHOD: Data were collected from 108 healthy participants from the Brains for Dementia Research cohort. Purposive sampling was used to assess feasibility and a randomised control trial design compared satisfaction and attitudes towards telephone and face-to-face assessment. Non-parametric tests were conducted to compare groups, and logistic regression was performed to assess the relationship between satisfaction and participant characteristics. RESULTS: Of the 80 participants offered telephone assessment, 67 (83.8%) agreed, 2 (2.5%) had a significant hearing impairment, 4 (5.0%) had potential memory problems and 7 (8.7%) declined. On average, telephone assessments lasted 38 min and duration was negatively associated with Telephone Interview of Cognitive Status-Modified scores (p = 0.001) and positively associated with age (p = 0.040), Neuropsychiatric Inventory scores (p = 0.019), Geriatric Depression Scale (p = 0.035) and Global Deterioration Scale (p = 0.022). Satisfaction was high in respect to organisational and personal aspects; ratings did not differ significantly across telephone and face-to-face assessment groups and were not related to socio-demographic characteristics. Participants undergoing telephone assessment were significantly more likely to hold positive attitudes towards this mode of assessment. CONCLUSIONS: Telephone assessment is feasible, time-efficient and acceptable to healthy, potential brain donors. When used with other assessment modes and within the context of established contact, telephone assessment offers greater flexibility to researchers and participants and represents an effective mechanism for overcoming the challenges of growing, ageing cohorts and uncertain resources. Copyright © 2016 John Wiley & Sons, Ltd.

Immune signatures and disorder-specific patterns in a cross-disorder gene expression analysis.

BACKGROUND: Recent studies point to overlap between neuropsychiatric disorders in symptomatology and genetic aetiology. AIMS: To systematically investigate genomics overlap between childhood and adult attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and major depressive disorder (MDD). METHOD: Analysis of whole-genome blood gene expression and genetic risk scores of 318 individuals. Participants included individuals affected with adult ADHD (n = 93), childhood ADHD (n = 17), MDD (n = 63), ASD (n = 51), childhood dual diagnosis of ADHD-ASD (n = 16) and healthy controls (n = 78). RESULTS: Weighted gene co-expression analysis results reveal disorder-specific signatures for childhood ADHD and MDD, and also highlight two immune-related gene co-expression modules correlating inversely with MDD and adult ADHD disease status. We find no significant relationship between polygenic risk scores and gene expression signatures. CONCLUSIONS: Our results reveal disorder overlap and specificity at the genetic and gene expression level. They suggest new pathways contributing to distinct pathophysiology in psychiatric disorders and shed light on potential shared genomic risk factors.

Brains for Dementia Research: Evolution in a Longitudinal Brain Donation Cohort to Maximize Current and Future Value.

Brain banking has a long and distinguished past, contributing greatly to our understanding of human neurological and psychiatric conditions. Brain banks have been operationally diverse, collecting primarily end stage disease, with variable quality clinical data available, yet it is now recognized the most informative brain donations are from those in longitudinally studied cohorts. The Brains for Dementia Research (BDR) cohort and program was for planned brain donation across five UK brain banks and one donation point, with standardized operating procedures, following longitudinal clinical and psychometric assessments for people with no cognitive impairment as well as those with dementia. Lay representatives with experience of dementia were involved from inception of BDR and 74.5% of all enquiries about participation came through routes that were directly attributable to or influenced by lay representatives. Ten years after inception, this ongoing project has received over 700 brain donations from the recruited cohort of 3,276 potential brain donors. At cohort census for this paper, 72.2% of the living cohort have no cognitive impairment by assessment, whereas only 28.3% of the donated cohort were without cognitive impairment. It is important that brain banks are agile and reflect the changing needs of the research community, given that 'big data', readiness cohorts, and GWAS demand large sample numbers of highly characterized individuals to facilitate new approaches and understanding of pathological processes in dementia.

Ticking boxes or meaningful partnership - The experience of lay representation, participant and study partner involvement in Brains for Dementia Research.

Brains for Dementia Research is a planned brain donation project with serial assessments during life. Lay input helped conceive and shape Brains for Dementia Research and over time a growing number of lay volunteers have engaged with the project in almost all areas of activity. Lay representatives serve on the management and tissue banking committees, have spoken at recruitment and team events, and have reviewed all public and participant facing communications. Recruitment and retention has been greatly facilitated through lay involvement with community organisations and creating regional/national media opportunities. The experience of Brains for Dementia Research has been that involvement of the public and study participants has the greatest positive impact on study outcomes when the relationship is a genuine partnership. Purposeful inclusivity allows lay people to contribute in situations where professionals might otherwise dominate. Maintaining an environment where both lay and professional staff can think creatively, express ideas and opinions, problem-solve and work well together has had a synergistic effect on project outcomes. Ensuring good communication between the various professionals and lay representatives has also been part of the success in keeping the cohort flexible and able to respond to the changing landscape of clinical trials, the emergence of 'big data' and to maximise the future potential of the cohort. Our lay representatives may also be study participants, study partners, or have personal experience of dementia and bring an energy, enthusiasm and commitment to what they do, that in turn encourages the professional team.

Behaviour management problems as predictors of psychotropic medication and use of psychiatric services in adults with autism.

We examined behaviour management problems as predictors of psychotropic medication, use of psychiatric consultation and in-patient admission in a group of 66 adults with pervasive developmental disorder (PDD) and intellectual disability (ID) and 99 controls matched in age, gender and level of ID. Overall, people with PDD had higher rates of most DAS behaviour problems and more frequent use of anti-psychotics than matched controls. Logistic regression analyses showed that physical aggression and problems such as pestering staff independently predicted use of anti-psychotics. Physical aggression and overactivity predicted further involvement of psychiatric services. PDD diagnosis predicted admission to an in-patient unit. The results suggest that externalizing problem behaviours in adults with autism can predict type of treatment intervention.

Referral trends in mental health services for adults with intellectual disability and autism spectrum disorders.

Researchers have paid increasing attention to mental health issues in adults with autism spectrum disorders (ASDs) over the last decades. However, little is known about how rates of clinical referrals, types of mental health diagnoses and treatment in adults with ASDs and intellectual disability have changed. We examined patterns of change in referral trends to specialist mental health services in south London from 1983 to 2000 (N = 137). The majority of the cases (58.4%) did not have a diagnosable psychiatric disorder. Schizophrenia was the most frequent psychiatric diagnosis followed by depression, adjustment reaction and anxiety. There was a significant change in the rate of referrals, an increase in the diagnosable psychiatric disorders over time and a significant reduction of medication at time of referral. There were no significant changes in the use of other therapeutic interventions. The proportion of participants living independently increased. Implications for services and future research are discussed.

Psychopathology in adults with autism and intellectual disability.

There have been few studies of psychopathology in adult with autism. This study examined psychiatric co-morbidity in 147 adults with intellectual disability (ID) and autism and 605 adults with ID but without autism. After controlling for the effects of gender, age, psychotropic medication and level of ID, people with autism and ID were no more likely to receive a psychiatric diagnosis than people with ID only. People with autism were less likely to receive a diagnosis of personality disorder. These findings cast doubts on the hypothesis that adults with ID and autism are more vulnerable to certain psychiatric disorders than non-autistic adults with ID.

Assessment of mental health problems in people with intellectual disabilities.

Although it is widely accepted that individuals with intellectul disabilities face an increased vulnerability to developing mental health problems, there is currently a lack of agreement about the most appropriate form of assessment. When applied to people with intellectual disabilities, there is no consensus about which problems should be included in the term "mental health problem," and identifying mental illness is far from straightforward. The adoption of standardized classification systems assumes that individuals with intellectual disabilities have adequate linguistic skills and they present mental health problems in the same way as members of the general population. Yet, individuals with intellectual disabilities are less likely to fulfill verbal expectations that are the basis of current classification systems and many exhibit problem behaviors incompatible with existing criteria. Nevertheless, accurate diagnosis provides a clear direction for interventions. Although there is currently a lack of consensus about which instruments are most effective, the routine use of valid and reliable assessment and monitoring tools may significantly improve the quality of research and care. The complexity of factors influencing the mental health of individuals with intellectual disabilities has implications for how these needs can be effectively met. Clearly, diagnostic classification provides only partial guidance to morbidity and the quality of life experienced and mental health services increasingly adopt a problem-based, "biopsychosocial" approach to assessment and treatment delivered by multidisciplinary teams. The most basic and vital role of carers within this context is the awareness that a person with intellectual disabilities may suffer from a mental illness. Carers play a central role in recognising possible mental illness, making referrals for further psychiatric assessment and providing diagnostic information and treatment feedback. In the absence of information about the manifestation of mental health problems in individuals with intellectual disabilities, it is likely that the signs of mental illness will be overlooked. Training initiatives, aimed at increasing the ability of care staff to recognise the signs of mental illness and to make informed referral decisions, are vital in ensuring adequate access to mental health services by individuals with intellectual disabilities.

Delineating ADHD and bipolar disorder: A comparison of clinical profiles in adult women.

OBJECTIVE: Overlapping symptoms can make the diagnostic differentiation of attention-deficit/hyperactivity disorder (ADHD) and bipolar disorder (BD) challenging in adults using current clinical assessments. This study sought to determine if current clinical measures delineate ADHD from BD in adults, comparing relative levels of ADHD, BD and emotional lability (EL) symptoms. METHODS: Sixty adult women with ADHD, BD or controls were compared on self-report and interview measures for ADHD symptoms, mania, depression, EL, and impairment. RESULTS: ADHD interview measures and self-ratings of ADHD symptoms best discriminated between ADHD and BD. Self-report measures of EL and depression showed non-specific enhancement in both clinical groups. BD-specific items may distinguish BD from ADHD if a retrospective time-frame is adopted. CONCLUSIONS: Using measures which capture specific symptoms of ADHD and chronicity/episodicity of symptoms facilitates the delineation of ADHD from BD in adult women.

European service perspectives for people with intellectual disabilities and mental health problems.

Services for people with intellectual disabilities, in the UK as elsewhere, have changed dramatically over the last 30 years; deinstitutionalisation has probably been the largest experiment in social policy in our time. The vast majority of people with intellectual disabilities, their families and carers have benefited from having a better quality of life as a result of deinstitutionalisation. However, much still needs to be done to integrate this population more into society and to ensure they are offered the appropriate supports to meet their needs.

Multiple exposure to life events and clinical psychopathology in adults with intellectual disability.

BACKGROUND: Relatively few studies have examined the impact of life events on mental health in the field of intellectual disability (ID), despite the possibility that adults with ID and mental health problems might be particularly vulnerable to multiple events. AIMS: To examine the impact of multiple life events on mental health in people with ID. METHOD: The sample consisted of 281 men and women with ID consecutively referred to a specialist mental health service in South-East London. For each participant, key informants completed the PAS-ADD Life Events list, while psychiatric diagnoses were made by clinicians based on ICD-10 criteria. RESULTS: Logistic regression analysis revealed that single exposure to life events was significantly associated with female gender, schizophrenia, personality disorders and depression. However, multiple exposure to life events was associated with personality disorder, depression and adjustment reaction. CONCLUSIONS: The present results suggest an increased vulnerability to life events in people with ID. A better understanding of the relationship between life events and mental health can enhance the development of interventions, which may benefit substantially this particular population.

Descriptive psychopathology in people with mental retardation.

This article considers variables associated with the presence of a psychiatric diagnosis in those referred to a specialist mental health service for people with mental retardation (MR). Data were collected on 752 newly referred clients. The presence of a psychiatric diagnosis was assessed by two psychiatrists based on International Classification of Diseases, 10th Revision, criteria. A series of binary logistic regression analyses were conducted. Older age, mild MR, admission to an inpatient unit, referral from generic mental health services, and detention under current mental health legislation were associated with an increased presence of any psychopathology. Severe MR, the presence of epilepsy, and residence with the family were associated with a lower incidence of any psychopathology. Findings relating to specific psychiatric diagnoses on the whole supported previous research. Clear service arrangements are necessary for people with mild MR who have a high incidence of psychiatric disorders.