Mental health in autistic adults: A rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective.

BACKGROUND: Autistic adults have high risk of mental ill-health and some available interventions have been associated with increased psychiatric diagnoses. Understanding prevalence of psychiatric diagnoses is important to inform the development of individualised treatment and support for autistic adults which have been identified as a research priority by the autistic community. Interventions require to be evaluated both in terms of effectiveness and regarding their acceptability to the autistic community. OBJECTIVE: This rapid review identified the prevalence of psychiatric disorders in autistic adults, then systematic reviews of interventions aimed at supporting autistic adults were examined. A rapid review of prevalence studies was completed concurrently with an umbrella review of interventions. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed, including protocol registration (PROSPERO#CRD42021283570). DATA SOURCES: MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews. STUDY ELIGIBILITY CRITERIA: English language; published 2011-2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults. APPRAISAL AND SYNTHESIS: Bias was assessed using the Prevalence Critical Appraisal Instrument and AMSTAR2. Prevalence was grouped according to psychiatric diagnosis. Interventions were grouped into pharmacological, employment, psychological or mixed therapies. Strength of evidence for interventions was assessed using GRADE (Grading of Recommendations, Assessment, Development and Evaluation). Autistic researchers within the team supported interpretation. RESULTS: Twenty prevalence studies were identified. Many included small sample sizes or failed to compare their sample group with the general population reducing validity. Prevalence of psychiatric diagnoses was variable with prevalence of any psychiatric diagnosis ranging from 15.4% to 79%. Heterogeneity was associated with age, diagnosis method, sampling methods, and country. Thirty-two systematic reviews of interventions were identified. Four reviews were high quality, four were moderate, five were low and nineteen critically low, indicating bias. Following synthesis, no intervention was rated as 'evidence based.' Acceptability of interventions to autistic adults and priorities of autistic adults were often not considered. CONCLUSIONS: There is some understanding of the scope of mental ill-health in autism, but interventions are not tailored to the needs of autistic adults, not evidence based, and may focus on promoting neurotypical behaviours rather than the priorities of autistic people.

Associations between Adolescent Psychosocial Factors and Disengagement from Education and Employment in Young Adulthood among Individuals with Common Mental Health Problems.

Transition to adulthood can be a challenging developmental task for adolescents with common mental health problems and is linked to adverse outcomes such as 'not in education, employment or training' (NEET). This study investigated longitudinal associations between adolescent psychosocial factors (e.g., self-esteem, aspirations, bullying, physical activity) and later NEET status among individuals with common mental health problems (i.e., depression and anxiety). A secondary data analysis of the Next Steps cohort study was completed using waves 2 and 8. Psychosocial factors, mental health, and background characteristics were captured when participants were aged 15-16 years (wave 2) while still in compulsory education. The 12-item General Health Questionnaire was used to identify adolescents with common mental health problems. The study population consisted of 2224 participants (females 66.8%) of which 1473 (66.2%) were aged 15 years and 751 (33.8%) were aged 16 years in wave 2. The outcome was NEET status at ages 25-26 years (wave 8). The results showed that after adjusting for background characteristics, adolescent self-esteem, locus of control, bullying, physical activity, job aspirations, and attitudes to school predicted NEET status. Educational aspirations, substance use, and behavioural problems were not significantly associated with NEET status. These findings provide new insights into the role of adolescent psychosocial factors in the context of education and employment outcomes for youth at risk and highlight the necessity of targeted mental health support to improve life chances.

Neurodevelopmental disorders and neurodiversity: definition of terms from Scotland's National Autism Implementation Team.

Adults with neurodevelopmental disorders frequently present to, but fit uneasily into, adult mental health services. We offer definitions of important terms related to neurodevelopmental disorders through unifying research data, medical and other viewpoints. This may improve understanding, clinical practice and development of neurodevelopmental disorder pathways within adult mental health services.

Development of a Pathway for Multidisciplinary Neurodevelopmental Assessment and Diagnosis in Children and Young People.

There is a variable standard of access to quality neurodevelopmental assessment and diagnosis. People may have negative experiences, encountering lengthy waiting times, and inconsistent practices. Practitioners need guidance on standards and practices for assessment and diagnosis matched to new ways of working. In this paper, we present a new pathway and recommendations for multidisciplinary neurodevelopmental assessment and diagnosis for children and young people (<19 years), developed by the Scottish Government funded National Autism Implementation Team (NAIT). Our research used the Medical Research Council guidance for the development of complex interventions and included several iterative stages. Stage 1: n = 44 stakeholders attended an event on developing new practices for diagnosis and assessment. Stage 2: a literature synthesis was completed by the research team of clinical guidelines and diagnosis and assessment tools. Stage 3: an event with n = 127 stakeholders included discussion and debate of the data from stages 1 and 2. Recommendations and a draft pathway were written. Stage 4: successive drafts of recommendations and the pathway documentation were circulated among an advisory group, including multidisciplinary clinical experts and people with lived experience, until the final pathway was agreed upon. The finalised pathway includes guidance on terminology, assessment, diagnosis, triage, time standards and engagement of people with lived experience. The new pathway has been adopted by the Scottish Government. The pathway and associated documentation are freely available online for use by others.

An enhanced individual placement and support (IPS) intervention based on the Model of Human Occupation (MOHO); a prospective cohort study.

BACKGROUND: Employment is good for physical and mental health, however people with severe mental illness (SMI) are often excluded from employment. Standard Individual Placement and Support (IPS) is effective in supporting around 55% of people with SMI into employment or education. Current research considers enhancements to IPS to improve outcomes for those requiring more complex interventions. Clinicians need to better understand who will benefit from these enhanced IPS interventions. This study offers a new enhanced IPS intervention and an approach to predicting who may achieve successful outcomes. METHODS: This prospective cohort study included people with SMI who participated in an enhanced IPS service and had prolonged absence from employment. Secondary data analysis was conducted of data gathered in routine clinical practice. Univariate analysis coupled with previous research and clinical consultation was used to select variables to be included in the initial model, followed by a backward stepwise approach to model building for the final multiple logistic regression model with an outcome of successful or unsuccessful goal attainment (employment or education). RESULTS: Sixty-three percent of participants in the enhanced IPS successfully attained employment or education. Significant relationships from bivariate analyses were identified between outcomes (employment or education) and seven psychosocial variables. Adapting Routines to Minimise Difficulties, Work Related Goals, and Living in an Area of Lesser Deprivation were found to be significant in predicting employment or education in the final multiple logistic regression model R2 = 0.16 (Hosmer-Lemeshow), 0.19 (Cox-Snell), 0.26 (Nagelkerke). Model χ2(7) = 41.38 p < .001. CONCLUSION: An enhanced IPS service had a 63% rate success in achieving employment or education, higher than comparable studies and provides an alternative to IPS-Lite and IPS-standard for more complex populations. Motivational and habitual psychosocial variables are helpful in predicting who may benefit from an enhanced IPS intervention supporting people after prolonged absence from employment. TRIAL REGISTRATION: NCT04083404 Registered 05 September 2019 (retrospectively registered).

Family group conferencing in dementia care: an exploration of opportunities and challenges.

BACKGROUND: The Family Group Conference (FGC) is an approach to partnership working which brings together service users, their support network and care professionals in a family-led decision making forum. Evidence, though limited, indicates that that FGC can enhance outcomes for service providers and their users. This study aimed to evaluate the impact of the pilot FGC service, delivered to people with dementia and their families, in terms of the experience of care provision by families and care professionals involved in the project. METHODS: Focus group interviews were conducted with families and professionals participating in the pilot intervention. RESULTS: FGC was perceived as having the potential to positively impact service users, their families, service providers and the wider culture of care. However, despite an overall positive evaluation the participants identified a number of challenges related to service implementation. Both the opportunities and challenges identified in this study are discussed in the context of the existing international evidence base. CONCLUSIONS: This study contributes to a better understanding of the applicability of FGC as a strategy to support people with dementia and their families. Although promising in terms of potential outcomes for service users and providers, FGC presents challenges which need to be carefully managed in order to secure maximum benefit to all parties.

Vocational rehabilitation: facilitating evidence based practice through participatory action research.

BACKGROUND: Improving vocational rehabilitation in line with the current evidence base is an area of considerable interest. Aims To describe the strategies used by a multidisciplinary team in the initial stages of a participatory action research (PAR) approach to improving a vocational rehabilitation service. METHOD: A literature review and PAR process were completed. One hundred and fifteen participants engaged in multifaceted data collection and analysis, building consensus around key principles for a new vocational rehabilitation service. RESULTS: A synthesis of our literature review and PAR process was developed into a set of principles for practice which we plan to implement across the service. CONCLUSIONS: We have developed methodologies in interdisciplinary collaborations spanning statutory and non-statutory services. We have developed a set of principles for practice and detailed plans for implementation are being drawn up to inform provision in the future.

Service-related needs of older people with dementia: perspectives of service users and their unpaid carers.

BACKGROUND: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples' lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs. METHOD: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers. RESULTS: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement. CONCLUSION: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

Readiness for employment: perceptions of mental health service users.

Work is good for both physical and mental health, and access to work is a basic human right. People with mental health conditions want to work and with the right support can work but are often excluded from the workplace. We explored factors influencing individual's perceptions of their readiness for employment. Participants' narratives focused particularly on personal causation and it's inter-reactions with other aspects of volition, habituation and the environment and highlight a number of key areas, which are discussed in relation to service provision. Sheltered workshops offer support and some structure and routine but may limit an individual's readiness for employment. Services should be evidence based and focused on real work opportunities which fit with individual's interests and values. Occupational therapy theory offers a unique and valuable perspective in understanding perceptions of readiness for employment and occupational therapists offer valid and useful assessments and interventions for vocational rehabilitation.

The National Women's Health Study: assembly and description of a population-based reproductive cohort.

BACKGROUND: Miscarriage is a common event but is remarkably difficult to measure in epidemiological studies. Few large-scale population-based studies have been conducted in the UK. METHODS: This was a population-based two-stage postal survey of reproductive histories of adult women living in the United Kingdom in 2001, sampled from the electronic electoral roll. In Stage 1 a short "screening" questionnaire was sent to over 60,000 randomly selected women in order to identify those aged 55 and under who had ever been pregnant or ever attempted to achieve a pregnancy, from whom a brief reproductive history was requested. Stage 2 involved a more lengthy questionnaire requesting detailed information on every pregnancy (and fertility problems), and questions relating to socio-demographic, behavioural and other factors for the most recent pregnancy in order to examine risk factors for miscarriage. Data on stillbirth, multiple birth and maternal age are compared to national data in order to assess response bias. RESULTS: The response rate was 49% for Stage 1 and 73% for the more targeted Stage 2. A total of 26,050 questionnaires were returned in Stage 1. Of the 17,748 women who were eligible on the grounds of age, 27% reported that they had never been pregnant and had never attempted to conceive a child. The remaining 13,035 women reported a total of 30,661 pregnancies. Comparison of key reproductive indicators (stillbirth and multiple birth rates and maternal age at first birth) with national statistics showed that the data look remarkably similar to the general population. CONCLUSIONS: This study has enabled the assembly of a large population-based dataset of women's reproductive histories which appears unbiased compared to the general UK population and which will enable investigation of hard-to-measure outcomes such as miscarriage and infertility.

Miscarriage, stillbirth and congenital malformation in the offspring of UK veterans of the first Gulf war.

OBJECTIVES: To assess whether the offspring of UK veterans of the first Gulf war are at increased risk of fetal death or congenital malformation. METHOD: This was a retrospective reproductive cohort study of UK Gulf war veterans and a demographically similar comparison group who were in service at the time but were not deployed to the Gulf. Reproductive history was collected by means of a validated postal questionnaire between 1998 and 2001. RESULTS: In all, 27 959 pregnancies reported by men and 861 pregnancies reported by women were conceived after the first Gulf war and before November 1997. The risk of reported miscarriage was higher among pregnancies fathered by Gulf war veterans than by non-Gulf war veterans (OR = 1.4, 95% CI: 1.3, 1.5). Stillbirth risk was similar in both groups. Male Gulf war veterans reported a higher proportion of offspring with any type of malformation than the comparison cohort (OR = 1.5, 95% CI: 1.3, 1.7). Examination by type of malformation revealed some evidence for increased risk of malformations of the genital system, urinary system (renal and urinary tract), and 'other' defects of the digestive system, musculo-skeletal system, and non-chromosomal (non-syndrome) anomalies. These associations were weakened when analyses were restricted to clinically confirmed conditions. There was little or no evidence of increased risk for other structural malformations, specific syndromes, and chromosomal anomalies. Among female veterans, no effect of Gulf war service was found on the risk of miscarriage. The numbers of stillbirths and malformations reported by women were too small to allow meaningful analyses. CONCLUSION: We found no evidence for a link between paternal deployment to the Gulf war and increased risk of stillbirth, chromosomal malformations, or congenital syndromes. Associations were found between fathers' service in the Gulf war and increased risk of miscarriage and less well-defined malformations, but these findings need to be interpreted with caution as such outcomes are susceptible to recall bias. The finding of a possible relationship with renal anomalies requires further investigation. There was no evidence of an association between risk of miscarriage and mothers' service in the gulf.

The study of reproductive outcome and the health of offspring of UK veterans of the Gulf war: methods and description of the study population.

BACKGROUND: The aim of this study is to determine whether Gulf war veterans and their partners are at increased risk of adverse reproductive events and whether their children have increased risk of serious health problems. Methods and response to the study are reported here. METHODS: This was a retrospective cohort study of reproduction among UK Gulf war veterans, with a comparison cohort of Armed Service personnel who were not deployed to the Gulf. Reproductive history and details of children's health was collected by means of a validated postal questionnaire. A separate study of non-responders was conducted. RESULTS: Questionnaires were returned by a total of 25,084 Gulf war veterans (24,379 men) and 19,003 (18,439 men) subjects in the comparison group. After adjusting for undelivered mail the response rate was 53% for Gulf war veterans and 42% for non-Gulf veterans among men, 72% and 60% among women. Data from the non-responder study suggests that failure to respond to the main survey was largely unrelated to reproduction. 11,155 (46%) male Gulf war veterans and 7,769 (42%) male non-Gulf war veterans had conceived, or attempted to conceive, since the Gulf war. They reported 16442 and 11517 pregnancies respectively in that period. For women, 313 (44%) Gulf veterans and 235 (42%) non-Gulf veterans reported 484 and 377 pregnancies respectively conceived since the Gulf war. CONCLUSIONS: This survey enabled collection of information on a range of reproductive outcomes from veterans of the Gulf war and a suitably matched comparison cohort. Although the response rate for men was disappointing, selection bias related to reproduction does not appear to be strong in these data.