Occupational Therapy and Arts Therapies
Permanent URI for this collectionhttps://eresearch.qmu.ac.uk/handle/20.500.12289/25
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Item Are we getting better at identifying and diagnosing neurodivergent girls and women? Insights into sex ratios and age of diagnosis from clinical population data in Scotland(Sage, 2025) Maciver, Donald; Roy, Anusua Singh; Johnston, Lorna; Boilson, Marie; Curnow, Eleanor; Johnstone-Cooke, Victiora; Rutherford, MarionThis study examined differences in referral and diagnosis based on sex recorded at birth (hereafter, ‘sex’), using case notes from 408 individuals diagnosed by 30 multidisciplinary teams across Scotland. Analyses focused on male-to-female ratios and median ages at referral and diagnosis across attention-deficit/hyperactivity disorder, autism and intellectual disability. The lifespan male-to-female ratio across all diagnoses was 1.31, varying by category and age. In autism, the male-to-female ratio was 2.21 for children under 10 years, but there were more females in adolescence (male-to female ratio=0.79) and adulthood (male-to-female ratio=0.94). Across the lifespan, combining all diagnoses, females were referred later (median ages: 14.4 vs 19.7 years; p<0.001) and diagnosed later (median ages: 15.2 vs 20.2 years; p<0.001), indicating a 5-year delay. Among autistic children and adolescents, females were referred later (median age: 7.5 vs 10.5years; p=0.002) and diagnosed later (median age: 9.3 vs 11.9years; p=0.003). However, no significant differences were found in age of referral or diagnosis for autistic adults. Overall, the results indicate partial equalisation of sex ratios across the lifespan, pronounced asymmetry in younger age groups, andconsistent delays in referral and diagnosis ages for females.Item Waiting Times and Influencing Factors in Children and Adults Undergoing Assessment for Autism, ADHD, and Other Neurodevelopmental Differences(John Wiley & Sons, Inc., 2025-02-24) Maciver, Donald; Roy, Anusua Singh; Johnston, Lorna; Boilson, Marie; Curnow, Eleanor; Johnstone‐Cooke, Victoria; Rutherford, MarionThis study explored waiting times and the factors influencing them in child and adult populations undergoing assessment for autism, ADHD, and other neurodevelopmental differences. The analysis focused on a retrospective review of 408 cases with assessments completed between October 2021 and May 2022, conducted by 30 diagnosing teams in Scotland. Data included age, final diagnosis, demographics, medical and developmental history, contact frequency, and assessment service adherence to best‐practice standards. Waiting times were calculated, and relationships were analyzed using linear regression. Median waiting times were 525 days (IQR 329–857) for children/adolescents and 252 days (IQR 106–611) for adults. Only 20% of children's and 47% of adult assessments met the proposed 252‐day diagnostic time target. Autism and ADHD were the most common diagnoses. Receiving > 1 neurodevelopmental diagnosis on completion was uncommon. Demographic factors did not significantly affect waiting times. Children/adolescents with more complex developmental and medical histories experienced longer waits (100.3 weeks vs. 67.7 weeks; p < 0.001), while adults with similar histories had shorter waits (32.7 weeks vs. 57.4 weeks; p = 0.016). Adults with ADHD experienced longer waits than autistic adults (63.4 weeks vs. 38.6 weeks, p = 0.002). Adherence to best‐practice quality standards was associated with shorter waits for children (β = 0.27, p = 0.002), but the relationship between standard adherence at different stages and for adults was less clear. More frequent appointments correlated with shorter adult waits (33.7 weeks vs. 59.2 weeks, p = 0.015). Gender distribution was balanced among adults, but children's services included more boys. The study highlights long waits and the need for improvement in processes.Item An analysis of prescribing data in attention-deficit hyperactivity disorder for adolescents and adults in Scotland(Cambridge University Press, 2024-08-08) Radley, Andrew; Melia, Barry; Maciver, Donald; Rutherford, Marion; Boilson, MarieBackground Medication, combined with environmental and psychosocial support, can mitigate adverse outcomes in attention-deficit hyperactivity disorder (ADHD). There is a need for research into regional and national prescription volumes and patterns, especially among adults. Aims This study analysed prescribing patterns for medications commonly used to treat ADHD in adolescents and adults. Method Data was extracted from the NHS Scotland Prescribing Information System on prescriptions for 7806 adolescents (aged 10–19 years) and 4998 adults (aged 20–59 years) in 2019. This included medications listed under Section 4.4 of the British National Formulary. We explored 2019 prescription patterns across different regions and estimated ADHD prevalence levels. Additionally, we assessed changes in dispensed prescriptions, defined daily dose and costs, compared with figures from 2010. Results Between 2010 and 2019, prescriptions for ADHD medications increased (dispensed prescriptions +233.2%, defined daily dose +234.9%, cost +216.6%). Despite these increases, analysis indicated that in 2019, considering a 5% estimated ADHD prevalence among adolescents, 73% were not prescribed medication, increasing to 81% at a 7% estimated prevalence. Similarly, among adults with a 2% estimated prevalence, 91% were not prescribed medication, rising to 96% at a 4% estimated prevalence. Regional disparities were evident, with 41–96% of adolescents and 85–100% of adults, based on ADHD prevalence estimates, not receiving a prescription, depending on area. Conclusions Although prescription rates for ADHD medication have increased over time, the data do not indicate excessive use of medication. Instead, they suggest that for some groups there is a lower use of medication compared with expected prevalence figures, especially among adults.Item 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(Public Library of Science, 2023-07-13) Curnow, Eleanor; Rutherford, Marion; Maciver, Donald; Johnston, Lorna; Prior, Susan; Boilson, Marie; Shah, Premal; Jenkins, Natalie; Meff, TamsinBackground 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.Item An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory(Frontiers Media, 2023-01-30) Maciver, Donald; Rutherford, Marion; Johnston, Lorna; Curnow, Eleanor; Boilson, Marie; Murray, MairéadBackground: People seeking support for neurodevelopmental differences often report waiting too long for assessment and diagnosis, as well as receiving inadequate support in educational and health settings. The National Autism Implementation Team (NAIT) developed a new national improvement programme in Scotland, focusing on assessment, diagnosis, educational inclusion, and professional learning. The NAIT programme was conducted within health and education services across the lifespan for a range of neurodevelopmental differences, including autism, developmental coordination disorder, developmental language disorder, and attention deficit hyperactivity disorder. NAIT included a multidisciplinary team, with the involvement of an expert stakeholder group, clinicians, teachers, and people with lived experience. This study explores how the NAIT programme was planned, delivered, and received over three years. Design: We performed a retrospective evaluation. We collected data from review of programme documents, consultation with programme leads and consultation with professional stakeholders. A theory-based analysis was completed, drawing on the Medical Research Council Framework for developing and evaluating complex interventions, and realist analysis methods. We developed a programme theory of the contexts (C), mechanisms (M), and outcomes (O) influencing the NAIT programme, based on comparison and synthesis of evidence. A key focus was on identifying the factors that contributed to the successful implementation of NAIT activities across different domains, including practitioner, institutional and macro levels. Results: On synthesis of the data, we identified the key principles underlying the NAIT programme, the activities and resources utilised by the NAIT team, 16 aspects of context, 13 mechanisms, and 17 outcome areas. Mechanisms and outcomes were grouped at practitioner level, service level and macro level. The programme theory is pertinent to observed practice changes across all stages of referral, diagnosis and support processes within health and education services for neurodivergent children and adults. Conclusions: This theory-informed evaluation has resulted in a clearer and more replicable programme theory that can be used by others with similar aims. This paper illustrates the value of NAIT, as well as realist and complex interventions methodologies as tools for policymakers, practitioners, and researchers.Item Neurodevelopmental disorders and neurodiversity: Definition of terms from Scotland's National Autism Implementation Team [Editorial](2022-03-28) Shah, Premal J.; Boilson, Marie; Rutherford, Marion; Prior, Susan; Johnston, Lorna; Maciver, Donald; Forsyth, KirstyAdults 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.