Barry Ingham

Development and validation of the Learning DisabilitiesDevelopment and Validation of the Learning Disabilities Needs Assessment Tool (LDNAT), a HoNOS-based needsassessment tool for use with people with intellectualdisability

BACKGROUND In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. METHOD An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency (n = 1692); test-retest reliability (n = 27); and concurrent validity (n = 160). RESULTS All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). CONCLUSIONS The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal and external validity were promising. Further evaluation of its sensitivity to changes in needs is now required.

Development and validation of the Learning Disabilities Needs Assessment Tool (LDNAT), a HoNOS‐based needs assessment tool for use with people with intellectual disability

BACKGROUND In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. METHOD An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency (n = 1692); test-retest reliability (n = 27); and concurrent validity (n = 160). RESULTS All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). CONCLUSIONS The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal and external validity were promising. Further evaluation of its sensitivity to changes in needs is now required.

An initial evaluation of direct care staff resilience workshops in intellectual disabilities services

The emotional responses to challenging behaviour of direct care staff who support people with intellectual disabilities is thought to be an important mediating factor within the stress experienced by staff and a potential maintaining factor in challenging behaviour. A brief workshop to improve direct care staff resilience was developed and initially evaluated using a measure of emotional reaction to challenging behaviour and a measure of burnout. It was found that negative emotional reactions to challenging behaviour significantly reduced following the workshop, but a measure of burnout did not. This may indicate the usefulness of this intervention with direct care staff in managing their emotional reactions to challenging behaviour. However, further development and evaluation of such interventions with direct care staff is required to explore ways of impacting upon burnout and managing the display of challenging behaviour.

Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research

Accessible Summary The NHS Constitution states that all patients should have opportunity to take part in approved research This study asked clinical researchers how they include people with intellectual disabilities and/or autism in research Many barriers were identified that relate to making mental capacity judgements Many researchers agreed new resources that support consent and capacity judgements for research would be helpful and gave some ideas about what could help . AbstractBackground Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22-item self-completed semi-structured questionnaire survey, either online or on paper. Results Twenty-one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research.

Correlates for the risk of specialist ID hospital admission for people with intellectual disabilities: development of the LDNAT inpatient index

Purpose The purpose of this paper is to analyse ratings data from the recently developed Learning Disability Needs Assessment Tool (LDNAT) to identify factors associated with specialist intellectual disability (ID) hospital admissions. Design/methodology/approach Ratings from 1,692 individuals were analysed and the LDNAT items differing significantly between inpatients and non-inpatients were identified. Statistical analyses on total scores derived from these items were used to calculate an optimal cut-off. This LDNAT inpatient index score was also confirmed via an alternative statistical technique. Findings On average, 18 of the 23 LDNAT item ratings were significantly higher in people with ID assessed as inpatients compared to those rated in community settings. Using the total of these items, the resulting LDNAT inpatient index was analysed. A cut-off score of 22.5 was calculated to be the optimal balance between sensitivity (0.833) and specificity (0.750). This was confirmed by calculating the Youden index (j=0.583). At this level 68 per cent of inpatients and 81 per cent of non-inpatient cases were correctly identified. Practical implications Currently there is a national (UK) programme to radically reduce the amount of specialist inpatient care for people ID. This will necessitate early identification of individuals most at risk of admission together with investment in improved, proactive community services if admissions to a diminishing bed-base are to remain manageable. Originality/value This study confirms the associations between mental health difficulties, challenging behaviour and specialist hospital admissions for people with ID, extending existing research by translating these findings into a clinically usable risk index.

Associations Between Mental Health Problems and Challenging Behavior in Adults With Intellectual Disabilities: A Test of the Behavioral Equivalents Hypothesis

ABSTRACT Introduction: Current research findings in the field of intellectual disabilities (ID) regarding the relationship between mental health problems and challenging behavior are inconclusive and/or contradictory. The aim of this study was to further investigate the putative association between these two highly prevalent phenomena in people with ID, and specifically to explore the hypothesis that challenging behaviors may be behavioral equivalents of mental health problems. Methods: A sample of 160 adults accessing secondary care ID health services was assessed using five validated measures. These included ratings of severity of disability, mental health problems, autism behaviors, physical health problems, and four different aspects of challenging behavior. In conjunction with demographic information, four multiple regression analyses were undertaken to examine the interaction between mental health problems (moderated by severity of disability) and ratings of overall challenging behavior, aggression, self-injurious behavior, and stereotypy. In each case, age, gender, autism, and physical health problems were included as covariates. Results: There was a statistically significant association between mental health problems and ratings of overall challenging behavior, as well as the moderating effect of severity of disability. Importantly, the positive association between mental health problems and challenging behavior was only significant at more severe levels of disability. Conclusions: These findings support the “behavioral equivalents” hypothesis for mental health problems and challenging behaviors. However, further longitudinal research is required before this hypothesis can be considered unequivocally supported.

The extension of a set of needs-led mental health clusters to accommodate people accessing UK intellectual disability health services

Abstract Background: A development of a needs-led mental health classification system based on the Health of the National Outcome Scales (HoNOS) has previously been developed. Aims: To extend the needs-based mental health (MH) clusters to accommodate the additional needs of people accessing UK intellectual disabilities health services. Method: Hierarchical cluster analysis was performed on assessment data from 18 National Health Service (NHS) provider organisations. The statistical results were clinically shaped through multi-disciplinary workshops. The resulting clusters were combined with six independently rated measures for a second data collection exercise. Based on these data, refinements were made before performing internal and external validity checks. Results: Eight additional clusters for people with health needs associated with their intellectual disabilities were produced. Three described primarily physical health (PH) needs, four described needs arising from behaviours which challenged (with/without autism) whilst one described people with generally low needs. Together, these covered 83.4% of cases with only a 10% overlap. The clusters were replicable and had clinical utility and validity. Conclusions: It was possible to extend the needs-led mental health classification system to capture the additional needs of people accessing UK intellectual disability services.

Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review:

Accurately diagnosing autism spectrum disorders in adulthood can be challenging. Structured questionnaires and diagnostic measures are frequently used to assist case recognition and diagnosis. This study reviewed research evidence on structured questionnaires and diagnostic measures published since the National Institute for Health and Care Excellence evidence update. The Cochrane library, Medline, Embase and PsycINFO were searched. In all, 20 studies met inclusion criteria. Sensitivity and specificity of structured questionnaires were best for individuals with previously confirmed autism spectrum disorder diagnoses and reduced in participants referred for diagnostic assessments, with discrimination of autism spectrum disorder from mental health conditions especially limited. For adults with intellectual disability, diagnostic accuracy increased when a combination of structured questionnaires were used. Evidence suggests some utility of diagnostic measures in identifying autism spectrum disorder among clinic referrals, although specificity for diagnosis was relatively low. In mental health settings, the use of a single structured questionnaire is unlikely to accurately identify adults without autism spectrum disorder or differentiate autism spectrum disorder from mental health conditions. This is important as adults seeking an autism spectrum disorder diagnostic assessment are likely to have co-existing mental health conditions. Robust autism spectrum disorder assessment tools specifically for use in adult diagnostic health services in the presence of co-occurring mental health and neurodevelopmental disorders are a research priority.

Identifying Needs-Based Groupings Among People Accessing Intellectual Disability Services

There is increasing emphasis on needs-led service provision for people with intellectual disability (ID). This study outlines the statistical cluster analysis of clinical data from 1,692 individuals accessing secondary care ID services in the United Kingdom (U.K.) Using objective needs assessment data from a newly developed ID assessment tool, six clusters were identified. These had clinical face validity and were validated using six concurrently (but independently) rated tools. In keeping with previous studies, the clusters varied in terms of overall level of need as well as specific clinical features (autism spectrum disorder, mental health problems, challenging behaviors and physical health conditions). More work is now needed to further develop these clusters and explore their utility for planning, commissioning and optimizing needs-led services.