Little is known about health-related quality of life (HRQoL) in familial intellectual disability. Economic evaluations of interventions for familial intellectual disability require HRQoL measured through utility data.

We aimed to estimate HRQoL in individuals with familial intellectual disability and their carers and spouses, and identify factors associated with HRQoL.

Families with at least one member with familial intellectual disability were recruited and completed a tailored questionnaire. HRQoL was measured with the Assessment of Quality-of-Life 8D for carers and spouses, and the Health Utilities Index 2 (HUI2) and 3 (HUI3) for individuals with intellectual disability.

A total of 108 carers and 35 spouses, caring for 171 individuals with intellectual disability, completed the survey. Health utility values for carers (0.58) and spouses (0.63) were significantly lower than age- and gender-adjusted population norms (0.8) (p < 0.05). Utility values for individuals with intellectual disability were 0.51 (HUI2) and 0.31 (HUI3), also significantly below age-adjusted norms (p < 0.05). In carers, approximately half reported a mental health condition, and multivariate regression showed that having a mental health disorder, financial stress and caring for someone with aggressive behaviour were associated with lower HRQoL. In individuals with intellectual disability, greater disability severity and need for full-time supervision were associated with lower HRQoL, whereas living with their carer was associated with higher HRQoL.

Familial intellectual disability is associated with significantly lower quality of life of individuals with intellectual disability, their carers and their spouses. HRQoL across the family may help guide planning of health and social support, and demonstrate to policy makers the additional support needs for these families.

There have been limited studies investigating psychiatric outcomes of childhood trauma in individuals with intellectual disability or borderline intellectual functioning.

To investigate the associations of (a) intellectual disability or borderline intellectual functioning with childhood trauma up to age 11 years; and (b) childhood trauma with psychiatric diagnostic, prescribing and behavioural outcomes in adolescence and early adulthood among individuals with intellectual disability or borderline intellectual functioning.

This was a prospective cohort study using data from the Avon Longitudinal Study of Parents and Children birth cohort with linked primary care data.

Of 8661 participants, 310 had intellectual disability or borderline intellectual functioning and 107 had intellectual disability. We found increased odds of bullying (odds ratio = 1.84, 95% CI: 1.39–2.43) and sexual abuse (odds ratio = 2.11, 95% CI: 1.09–4.11) among individuals with intellectual disability or borderline intellectual functioning compared with those without. In the group with intellectual disability, the odds of bullying were attenuated (odds ratio = 1.66, 95% CI: 0.97–2.86), and estimates for sexual abuse were imprecise (odds ratio = 0.69, 95% CI: 0.09–5.09). Among those with intellectual disability or borderline intellectual functioning, we found increased odds of challenging behaviour (odds ratio = 2.62, 95% CI: 1.05–6.57), psychotropic prescribing (odds ratio = 2.73, 95% CI: 1.55–4.81), and suicidal and self-harm behaviours (odds ratio = 3.42, 95% CI: 1.15–10.20) in individuals who had experienced bullying, and increased odds of challenging behaviour (odds ratio = 3.31, 95% CI: 1.28–8.53) in individuals who had experienced emotional abuse compared with those who had experienced no trauma.

We provide evidence of increased odds of childhood bullying and sexual abuse among those with intellectual disability or borderline intellectual functioning. In this group, bullying is associated with increased odds of challenging behaviour, psychotropic prescribing, and suicidal and self-harm behaviours.

Neuroimaging research in autism often excludes individuals with co-occurring intellectual impairment or minimally verbal status, limiting the generalisability of findings. Understanding magnetic resonance imaging (MRI) scan success predictors in a representative autistic sample is crucial for equitable research.

This study identified factors predicting successful brain MRI acquisition and data quality in diverse autistic individuals, focusing on including those with intellectual impairment or minimally verbal status.

A total of 122 participants (83 autistic individuals (27 with intellectual impairment, 19 with minimally verbal status) and 39 typically developing controls) received multi-modal brain MRI scans (including structural, resting-state functional and diffusion MRI). Scan success, assessed using both binary criteria and quantitative data-quality metrics, was related to participant characteristics.

Although overall scan success was high, specific factors differentiated success within subgroups. Key factors contributing to scan success included age, non-verbal intelligence and attention-deficit hyperactivity disorder (ADHD) symptoms. Older participants, those with fewer ADHD symptoms and those with higher non-verbal intelligence were more likely to achieve successful scans, regardless of autism diagnosis. Higher data quality, particularly in structural and functional MRI, was associated with higher intelligence, better adaptive functioning, fewer autistic and ADHD symptoms, and fewer behavioural problems.

Identifying these factors is key to designing more inclusive and effective neuroimaging protocols. This work paves the way for more comprehensive research into the neurobiology of the full autism spectrum, and offers insights for improving the clinical MRI experience for autistic individuals with diverse support needs. Individualised strategies may also be useful in clinical settings, helping to improve the experience of MRI scanning for autistic individuals.

People with intellectual disabilities experience higher rates of mental disorders, contributing to restrictive practices and premature mortality. Prevalence data are essential to understanding the patterns of disease, and for the development of tailored interventions.

To systematically examine the burden and pattern of mental disorders in people with intellectual disabilities across the lifespan.

We searched six databases (inception to 17 October 2024), and conducted a manual search up to 15 December 2024, for systematic reviews on the prevalence of mental disorders in people with intellectual disabilities with or without neurodevelopmental conditions. We conducted a narrative synthesis of prevalence rates, including those stratified by intellectual disability level, sex, age and autism, where available, and compared these with published prevalence rates in people without intellectual disabilities (International Prospective Register of Systematic Reviews, no. CRD42024610611).

We included 26 systematic reviews: 7 meta-analyses and 19 narrative reviews. Compared with the general population, the prevalence of schizophrenia (3.55–4.80%), anxiety (5.4–5.5%) and obsessive–compulsive disorders (2.4%) appeared higher, whereas that of mood (6–7%), personality and post-traumatic stress disorders appeared lower. Study quality was moderate to critically low. For syndromic intellectual disabilities we noted high anxiety rates in fragile-X, Williams and 22q11.2 deletion syndromes, and in those with co-occurring autism. We found gaps on dementia, bipolar, substance use and eating disorders, and limited data stratified by intellectual disability level, sex and age.

This umbrella review confirms the high prevalence of mental disorders among people with intellectual disabilities, and highlights limited evidence for several conditions and population subgroups, including for minoritised ethnic groups. Standardised, high-quality epidemiological research is needed to shape clinical care and public mental health policy.

Adults with intellectual disabilities who display behaviours that challenge (BtC) are more prone to poor health.

This study seeks to evidence the long-term health outcomes for those who display BtC.

We conducted a longitudinal cohort study of adults with intellectual disabilities aged ≥18 years in England, using data from the Clinical Practice Research Datalink Aurum (January 2003 to December 2023) linked to Hospital Episode Statistics and Office for National Statistics. Main outcome measures were annual health checks, general practitioner referrals, emergency visits, out-patient attendance, in-patient admissions and mortality.

Among 83 166 adults with intellectual disabilities (mean age 38.6 years), 18.5% had a record of BtC, with similar sociodemographic distributions to those without BtC, but higher rates of physical and mental health comorbidities and uptake of annual health checks. A total of 72.5% of participants with BtC were receiving psychotropic medication(s). Adults with BtC had higher rates of mental health out-patient attendance (odds ratio: 1.42, 95% CI 1.33–1.52) and in-patient admissions (incidence rate ratio (IRR): 1.19, 95% CI 1.09–1.29), but consistently lower rates of physical health out-patient attendance (IRR = 0.81, 95% CI 0.78–0.84) and in-patient admissions (IRR = 0.77, 95% CI 0.74–0.79), after adjusting for demographic and clinical characteristics. BtC were not associated with mortality after adjustment for comorbidities (hazard ratio: 0.97, 95% CI 0.93–1.00).

This longitudinal study not only corroborated the markedly elevated burden of physical and mental health comorbidities among individuals displaying BtC, but also indicated that repeated efforts to improve health outcomes have yielded minimal measurable benefit over time. The apparent absence of progress is likely underpinned by a combination of insufficiently effective or poorly tailored interventions and wider systemic constraints that limit the capacity of services to respond to the complex needs of this population.

People with intellectual disability experience substantial health inequities, including higher multimorbidity, increased healthcare utilisation and markedly reduced life expectancy. High-quality research is essential to address these disparities. The National Institute for Health and Care Research (NIHR) funded Research Delivery Network provides the infrastructure/expertise/support needed to deliver NIHR-funded studies, and supports studies funded by a non-commercial/industry partner. However, the effectiveness of NIHR-funded studies versus those supported in driving impactful intellectual disability research remains unclear.

To evaluate and compare the outcomes of NIHR-funded and supported intellectual disability research.

All NIHR studies (funded/supported) relating to intellectual disability (2010–2020) were identified through systematic register searches. Primary outcomes included publication rates and impact on local, national and international clinical guidelines. Data collection was supplemented with a questionnaire to chief investigators and literature searches. Quantitative analyses examined associations between funding status, study design, publication and guideline impact, whereas qualitative responses explored implementation challenges.

In total, 88 projects were identified, and 42% (37/88) were NIHR-funded. Overall, 81% of studies generated at least one publication and 28% informed clinical guidelines. NIHR funding was not significantly associated with publication or guideline impact. Randomised controlled trials (RCTs) were significantly more likely to be published and more likely to influence non-UK national and international guidelines than non-RCTs. The amount of funding showed no association with impact. Qualitative findings highlighted funding constraints, staff capacity and stakeholder engagement as key determinants of implementation.

NIHR-funded intellectual disability research was no more likely than NIHR-supported studies to result in publications or guideline impact.

Long-term segregation (LTS) is used in mental health hospitals in England to manage individuals perceived to pose a sustained risk of harm to others. Increasing evidence indicates that LTS causes significant psychological and physical harm and may breach international human rights standards. The HOPE(S) programme (2022–2025) was introduced nationally to reduce, and ultimately end, the use of LTS for autistic people, individuals with learning disabilities and children and young people.

To explore the experiences of LTS from different perspectives and to examine its impact through a human rights lens.

Qualitative data were collected from 73 participants, including people with lived experience of LTS, family members, HOPE(S) practitioners, clinical staff, commissioners and regulators. Reflexive thematic analysis was conducted as part of a wider, mixed-methods evaluation of the HOPE(S) programme.

LTS was described by most participants as harmful, dehumanising and lacking in therapeutic value. Four interrelated themes emerged: (a) dehumanisation and erosion of personhood; (b) safeguarding and systemic failure; (c) psychological and relational harm; and (d) loss of hope and systemic inertia. These experiences reflected breaches of the Convention on the Rights of Persons with Disabilities, and of the Convention on the Rights of the Child.

LTS is not a therapeutic intervention and is associated with profound psychological harm and human rights violations. Systemic reform and implementation of rights-based, trauma-informed alternatives, such as the HOPE(S) model, are urgently required to safeguard well-being and dignity in mental healthcare.