Intellectual disability is defined as an IQ of 70 or below. Women with intellectual disability frequently experience menstrual distress leading to the use of hormonal medications such as depot medroxyprogesterone acetate (DMPA). Despite risks such as reduced bone mineral density (BMD) and weight gain, DMPA is widely used in this cohort, prompting investigation into its suitability and risks.

A narrative review and local service evaluation were conducted to determine whether clinical management reflected recommendations in the literature.

PsycINFO and Medline were searched for articles post-1995 on contraception in menstruating women with intellectual disability. Contraceptive use in 100 randomly selected women was evaluated. Data were collected on physical health issues, general practitioner records were reviewed for contraceptive administration and risk discussions, and surveys assessed risk understanding and satisfaction.

The review identified 27 papers with higher DMPA use in the intellectual disability population compared to the general population, and specific BMD risks. The case series found 23 women with intellectual disability using DMPA, and revealed knowledge gaps in risk and monitoring, inappropriate use given individual risk, and poor proactive risk management.

Findings indicate disproportionate DMPA use in women with intellectual disability, with inadequate clinical justification and risk awareness. Many women and carers were unaware of BMD risks, and DMPA alternatives were rarely considered. Individualised contraceptive management and closer review of DMPA use in this cohort is needed. Monitoring could include dual X-ray absorptiometry (DEXA) scans, vitamin D and calcium supplementation, and weight management. Further research is needed into higher DMPA use and risks within this population.

Group cognitive stimulation therapy (CST) has been shown to improve cognition and quality of life of people with dementia in multiple trials, but there has been scant research involving people with intellectual disability and dementia. This study aimed to assess the feasibility of conducting a randomised controlled trial of group CST for this population.

To assess the feasibility of participant recruitment and retention, the appropriateness of outcome measures, and the feasibility of group CST (adherence, fidelity, acceptability), as well as the feasibility of collecting data for an economic evaluation.

Participants were recruited from six National Health Service trusts in England and randomised to group CST plus treatment as usual (TAU) or TAU only. Cognition, quality of life, depression, and use of health and social care services were measured at baseline and at 8–9 weeks. Qualitative interviews with participants, carers and facilitators were used to explore facilitators of and barriers to delivery of CST. Trial registration number: ISRCTN88614460.

We obtained consent from 46 participants, and 34 (73.9%) were randomised: 18 to CST and 16 to TAU. All randomised participants completed follow-up. Completion rates of outcome measures (including health economic measures) were adequate; 75.7% of sessions were delivered, and 56% of participants attended ten or more. Fidelity of delivery was of moderate quality. CST was acceptable to all stakeholders; barriers included travel distance, carer availability and sessions needing further adaptations. The estimated cost per participant of delivering CST was £602.

There were multiple challenges including recruitment issues, a large dropout rate before randomisation and practical issues affecting attendance. These issues would need to be addressed before conducting a larger trial.

Treatment guidelines recommend evidence-based psychological therapies for adults with intellectual disabilities with co-occurring anxiety or depression. No previous research has explored the effectiveness of these therapies in mainstream psychological therapy settings or outside specialist settings.

To evaluate the effectiveness of psychological therapies delivered in routine primary care settings for people with intellectual disability who are experiencing co-occurring depression or anxiety.

This study used linked electronic healthcare records of 2 048 542 adults who received a course of NHS Talking Therapies for anxiety and depression in England between 2012 and 2019 to build a retrospective, observational cohort of individuals with intellectual disability, matched 1:2 with individuals without intellectual disability. Logistic regressions were used to compare metrics of symptom improvement and deterioration used in the national programme, on the basis of depression and anxiety measures collected before and at the last attended therapy session.

The study included 6870 adults with intellectual disability and 2 041 672 adults without intellectual disability. In unadjusted analyses, symptoms improved on average for people with intellectual disability after a course of therapy, but these individuals experienced poorer outcomes compared with those without intellectual disability (reliable improvement 60.2% for people with intellectual disability v. 69.2% for people without intellectual disability, odds ratio 0.66, 95% CI 0.63–0.70; reliable deterioration 10.3% for people with intellectual disability v. 5.7% for those without intellectual disability, odds ratio 1.89, 95% CI 1.75–2.04). After propensity score matching, some differences were attenuated (reliable improvement, adjusted odds ratio 0.97, 95% CI 1.91–1.04), but some outcomes remained poorer for people with intellectual disability (reliable deterioration, adjusted odds ratio 1.28, 95% CI 1.16–1.42).

Evidence-based psychological therapies may be effective for adults with intellectual disability, but their outcomes may be similar to (for improvement and recovery) or poorer than (for deterioration) those for adults without intellectual disability. Future work should investigate the impact of adaptations of therapies for those with intellectual disability to make such interventions more effective and accessible for this population.

There is a need for better collaborative care between services to improve healthcare provision for people with intellectual disabilities. In the UK, the learning disability psychiatry multidisciplinary team (MDT) is a specialist team responsible for providing and coordinating care for people with intellectual disabilities.

To document learning disability MDT perspectives on factors influencing healthcare quality for people with intellectual disabilities.

Healthcare professionals who were members of a learning disability MDT within a National Health Service Trust in the West Midlands were purposively sampled for interview (n = 11). Participants included psychiatrists, nurses, occupational therapists and speech and language therapists. Data were analysed thematically using Braun and Clarke’s six-stage approach.

Factors influencing the quality of healthcare provision included: the learning disability MDT working to overcome systemic barriers; the consequences of specific failures within mainstream healthcare services, such as diagnostic overshadowing; inadequate use of information collated in health passports; and inadequate capacity assessments of people with intellectual disabilities. Improvements in healthcare provision for people with intellectual disabilities require better accessibility to healthcare and better training for healthcare professionals so they can understand the health needs of people with intellectual disabilities.

A rapid review of practices around health passports for people with intellectual disabilities should be conducted. Healthcare professionals working in mainstream healthcare services need an increased awareness of the harms of diagnostic overshadowing and inadequate capacity assessments. Conclusions are based on findings from MDTs within one health board; future work may focus on understanding perspectives from different teams.

People with intellectual disability often face barriers accessing mainstream psychological services due to a lack of reasonable adjustments, including the absence of adapted versions of routine outcome measures. Adapted versions of the Patient Health Questionnaire-9 (PHQ-9) and the Generalised Anxiety Disorder-7 (GAD-7) have been created for adults with ID.

This study aims to evaluate the psychometric properties of the adapted PHQ-9 and GAD-7.

The adapted PHQ-9 and GAD-7 and the Glasgow Depression and Anxiety Scales (GDS-ID, GAS-ID) were administered to 47 adults (n=21 clinical group; n=26 community group) with ID. Cross-sectional design and between-group analyses tested for discriminant validity. Concurrent and divergent validity was tested using correlational designs. Reliability was investigated by internal consistency and test–retest analysis.

The clinical group scored significantly higher on the adapted PHQ-9 (t45=–2.28, p=.03, 95% CI [–7.09, –.45]) and GAD-7 (t45=–3.52, p=.001, 95% CI [–7.44, –2.02]) than the community group, evidencing discriminant validity. The adapted PHQ-9 correlated with the GDS-ID (r47=.86, p<.001) and the adapted GAD-7 correlated with the GAS-ID (r46=.77, p<.001). The adapted PHQ-9 (Cronbach’s α=.84, ICC=.91) and GAD-7 (Cronbach’s α=.86, ICC=.77) had good internal consistency and test–retest reliability.

Preliminary research suggests the adapted PHQ-9 and GAD-7 are valid and reliable measures. They could provide a reasonable adjustment for the minimum dataset used in NHS Talking Therapies and can be easily administered in routine clinical practice. Further work to establish additional psychometric properties is now required.

People with an intellectual disability are vulnerable to additional disorders such as dementia. Psychometrically sound and specific instruments are needed for assessment of cognitive functioning in cases of suspected dementia.

To evaluate the construct and item validity, internal consistency and test–retest reliability of a new neuropsychological test battery, the Dementia Test for People with Intellectual Disability (DTIM).

The DTIM was applied to 107 individuals with intellectual disability with (n = 16) and without (n = 91) dementia. The psychometric properties of the DTIM were assessed in a prospective study. The assessors were blinded to the diagnostic assignment.

Confirmatory factor analysis at the scale level showed that a one-factor model fitted the data well (root mean square error of approximation < 0.06, standardised root mean square residual < 0.08, comparative fit index > 0.9). At the domain level, one-factor models showed reasonable-to-good fit index for five of seven domains. Internal consistency indicated excellent reliability of the overall scale (Cronbach’s α: 0.94 for dementia and 0.95 for controls). Item analysis revealed a wide range of difficulties (0.19–0.75 for dementia, 0.31–0.87 for controls), with minimal floor and ceiling effects. Eleven items (26%) had discrimination value ≤ 0.50. Test–retest reliability (n = 82) was high, with intraclass correlations of 0.95 (total score) and 0.69–0.96 (domains).

The DTIM fits a one-factor model and demonstrates internal and test–retest reliability; thus, it is suitable for use in cases of suspected dementia in people with various intellectual disabilities.

Nearly 25% of people with intellectual disability (PwID) have epilepsy compared to 1% of the UK general population. PwID are commonly excluded from research, eventually affecting their care. Understanding seizures in PwID is particularly challenging because of reliance on subjective external observation and poor objective validation. Remote electroencephalography (EEG) monitoring could capture objective data, but particular challenges and implementation strategies for this population need to be understood.

This co-production aimed to explore the accessibility and potential impact of a remote, long-term EEG tool (UnEEG 24/7 SubQ) for PwID and epilepsy.

We conducted six, 2-hour long workshops; three with people with mild intellectual disability and three with families/carers of people with moderate–profound intellectual disability. Brief presentations, easy read information and model demonstrations were used to explain the problem and device. A semi-structured guide developed by a communication specialist and art-based techniques facilitated discussion with PwID. For family/carers, active listening was employed. All conversations were recorded and transcribed. Artificial intelligence-based coding and thematic analysis (ATLAS.ti and ChatGPT) were synthesised with manual theming to generate insights.

Co-production included four PwID, five family members and seven care professionals. Three main themes were identified: (1) perceived benefits for improving seizure understanding, informing care and reducing family and carer responsibility to accurately identify seizures; (2) the device was feasible for some PwID but not all; and (3) appropriate person-centred communication is essential for all stakeholders to reduce concerns.

The workshops identified key benefits and implementing barriers to SubQ in PwID.

Adults with intellectual disability experience increased rates of mental health disorders and adverse mental health outcomes.

Explore childhood risk factors associated with adverse mental health outcomes during adulthood as defined by high cost of care, use of psychotropic medication without a severe mental illness and psychiatric hospital admissions.

Data on 137 adults with intellectual disability were collected through an intellectual disability community service in an inner London borough. Childhood modifiable and non-modifiable risk factors were extracted from records to map onto variables identified as potential risk factors. Logistic and linear regression models were employed to analyse their associations with adverse outcomes.

We showed that the co-occurrence of intellectual disability with autism spectrum disorder and/or attention-deficit hyperactivity disorder (ADHD) were associated with psychotropic medication use and high-cost care packages. However, when challenging behaviour during childhood was added, ADHD and autism spectrum disorder were no longer significant and challenging behaviour better explained medication prescribing and higher cost care. In addition, the severity of intellectual disability was associated with higher cost care packages. Ethnicity (Black and mixed) also predicted higher cost of care.

Challenging behaviour during childhood emerged as a critical variable affecting outcomes in young adulthood and mediated the association between adult adverse mental health outcomes and co-occurring neurodevelopmental conditions, that is, ADHD and autism. These findings emphasise the need for effective early intervention strategies to address challenging behaviour during childhood. Such interventions for challenging behaviour will need to take into consideration autism and ADHD.