Psychotropic medicines' prevalence, patterns and effects on cognitive and physical function in older adults with intellectual disability in Ireland: longitudinal cohort study, 2009-2020.

BACKGROUND: The frequent prescribing of psychotropics and high prevalence of polypharmacy among older adults with intellectual disabilities require close monitoring. AIMS: To describe change in prevalence, predictors and health outcomes of psychotropic use during the four waves (2009/2010, 2013/2014, 2016/2017, 2019/2020) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). METHOD: Eligible participants were adults (≥40 years) with intellectual disabilities who participated in all four waves of IDS-TILDA and who reported medication use for the entire period. Differences between groups were tested using Cochran's Q test for binary variables and the McNemar-Bowker test for variables with more than two categories. Generalised estimating equation models were used to assess associations between psychotropic use, participants' characteristics and health outcomes. RESULTS: Across waves (433 participants) there were no significant differences in prevalence of psychotropic use (61.2-64.2%) and psychotropic polypharmacy (42.7-38.3%). Antipsychotics were the most used subgroup, without significant change in prevalence between waves (47.6-44.6%). A significant decrease was observed for anxiolytics (26.8-17.6%; P < 0.001) and hypnotics/sedatives (14.1-9.0%; P < 0.05). A significant increase was recorded for antidepressants (28.6-35.8%; P < 0.001) and mood-stabilising agents (11.5-14.6%; P < 0.05). Psychotropic polypharmacy (≥2 psychotropics) was significantly associated with moderate to total dependence in performing activities of daily living over the 10-year period (OR = 1.80, 95% CI 1.21-2.69; P < 0.05). CONCLUSIONS: The study indicates an increase in usage of some classes of psychotropic, a reduction in others and no change in the relatively high rate of antipsychotic use over 10 years in a cohort of older adults with intellectual disabilities and consequent risk of psychotropic polypharmacy and medication-related harm.

A longitudinal exploration of self-reported TV behaviours as a surrogate for sedentary behaviour in older adults with an intellectual disability from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA) study.

This study presents the findings of an investigation into the self-reported TV habits of adults with an intellectual disability, where time watching TV was used as a proxy for sedentary behaviour (SB). Risk factors identified for the general and intellectual disability populations and standard covariates of age, sex, level of intellectual disability, living circumstances and BMI were explored to determine their viability as contributors to increased TV viewing and SB. Missing data was imputed using Multiple Imputation Chained Equation (MICE). Multinomial logistic regression and Chi-squared Automatic Interaction Detector Analysis (CHAID) analyses of risk factors for increased TV viewing were explored and compared. The Systems of Sedentary Behaviour (SOS) framework was used to structure results. Novel risk factors for increased TV viewing were identified.

Enabling older adults with intellectual disability to become physical activity leaders in their community: Pilot study.

People with intellectual disabilities (ID) have high levels of sedentary behaviour and co-morbid health conditions. There is also increased longevity for this group which is an incredible success story but one which also poses challenges to the health system. For the first time, the mainstream health system needs to plan for and address age related health needs of people with ID. It also demands consideration of age-appropriate health-promotion efforts to support this ageing population with life-long disability. A physical activity programme, People with Intellectual Disability as Physical Activity Leaders (PPALs), was co-designed and co-developed with older adults (40+ years) with intellectual disability (ID). The process, content and outcomes of the pilot are presented in this paper. Expertise from three sectors: non-statutory academic and people with intellectual disabilities and their supporters worked collaboratively for successful completion of the project.

Does Arterial Stiffness Predict Cardiovascular Disease in Older Adults With an Intellectual Disability?

BACKGROUND: Arterial stiffness has been associated with an increased risk of cardiovascular disease (CVD) in some patient populations. OBJECTIVES: The aims of this study were to investigate (1) whether there is an association between arterial stiffness, as measured by the Mobil-O-Graph, and risk for CVD in a population of individuals with intellectual disability and (2) whether arterial stiffness can predict the risk for CVD. METHODS: This cross-sectional study included 58 individuals who participated in wave 4 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (2019-2020). Statistical models were used to address the first aim, whereas machine learning models were used to improve the accuracy of risk predictions in the second aim. RESULTS: Sample characteristics were mean (SD) age of 60.69 (10.48) years, women (62.1%), mild/moderate level of intellectual disability (91.4%), living in community group homes (53.4%), overweight/obese (84.5%), high cholesterol (46.6%), alcohol consumption (48.3%), hypertension (25.9%), diabetes (17.24%), and smokers (3.4%). Mean (SD) pulse wave velocity (arterial stiffness measured by Mobil-O-Graph) was 8.776 (1.6) m/s. Cardiovascular disease risk categories, calculated using SCORE2, were low-to-moderate risk (44.8%), high risk (46.6%), and very high risk (8.6%). Using proportional odds logistic regression, significant associations were found between arterial stiffness, diabetes diagnosis, and CVD risk SCORE2 (P < .001). We also found the Mobil-O-Graph can predict risk of CVD, with prediction accuracy of the proportional odds logistic regression model approximately 60.12% (SE, 3.2%). Machine learning models, k-nearest neighbor, and random forest improved model predictions over and above proportional odds logistic regression at 75.85% and 77.7%, respectively. CONCLUSIONS: Arterial stiffness, as measured by the noninvasive Mobil-O-Graph, can be used to predict risk of CVD in individuals with intellectual disabilities.

Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

BACKGROUND: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. METHOD: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. RESULTS: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. CONCLUSIONS: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

Developing a health promoting university in Trinity College Dublin-overview and outline process evaluation.

Higher Education Institutions (HEIs) have the potential to impact positively on the health and wellbeing of their staff and students. Using and expanding on the 'health promoting university' (HPU) platform within HEIs, this article provides a description of 'Healthy Trinity', which is an initiative underway in Trinity College Dublin, the University of Dublin. First, Healthy Trinity is contextualized in background literature including international and national policy and practice. Second, an overview of Healthy Trinity is provided including its vision and goals. Third, the article describes the steps taken relating to the identification of stakeholders and use of a network and a co-lead model. Within this approach, the article describes a partnership approach whereby responsibilities regarding health and wellbeing are shared by individuals and the institution. Fourth, the design and implementation of Healthy Trinity is discussed by taking a 'settings approach', in which the emphasis for change is placed on individual behaviours, environment, policy and organizational culture. Consideration is given to the interplay between intervention, implementation strategy and context for successful systemic implementation. The fifth element presented is the early-stage challenges encountered during implementation, such as the need to secure recurrent funding and the importance of having a direct input to the governance of the University to enable systemic change. The sixth and final component of the article is an outline of Healthy Trinity's intention to utilize a process evaluation of the early implementation phases of this complex intervention within a settings approach. Potential deliverables and impacts of this HPU initiative are presented and discussed.

Universities, such as Trinity College Dublin, the University of Dublin, can be looked at as a community of staff and students. The university community has needs in terms of health and wellbeing. 'Healthy Trinity' attempted to build strategies and practices to meet these needs for its community. The approach taken was from multiple angles and involved students and staff, focusing on both individual and organizational responsibility to promote and encourage healthy behaviours. Healthy Trinity achieved some successes as well as encountering some challenges. This article explores how the university might build upon the successes of Healthy Trinity in order to embed a culture which prioritizes health and wellbeing for the entire university community. The article also looks at the broader impact of achieving this goal, namely the University's contribution to a healthier community beyond the university setting.

Physical health effects of sedentary behaviour on adults with an intellectual disability: A scoping review.

This literature review was designed to establish the effects of sedentary behaviour on the physical health of adults with an intellectual disability. Sedentary behaviour is defined as any waking behaviour characterized by an energy expenditure of ≤1.5 METs while in a sitting, lying or reclining posture. An extensive search was executed in six databases: EMBASE, Medline, CINAHL, PsycINFO, ASSIA and Web of Science. Following screening, 18 articles remained for inclusion in the review. A thematic analysis using the Braun and Clarke six step process resulted in the identification of seven broad health areas. Studies showed a prevalence of obesity, multimorbidity and metabolic syndrome as well as elevated levels of sedentary behaviour in adults with an intellectual disability. This literature review demonstrated that sedentary behaviour could be a contributor to the poor health which is common in adults with an intellectual disability. However to date the body of evidence does not confirm a cause-and-effect relationship.

Recruitment and retention in longitudinal studies of people with intellectual disability: A case study of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

BACKGROUND: Longitudinal study of people with intellectual disability and other difficult to reach populations requires specific recruitment and retention strategies to be successful. AIMS: This paper provides a case study of participant recruitment and retention for a longitudinal study of ageing among older adults with intellectual disability in Ireland. METHODS AND PROCEDURES: Development and implementation of strategies to recruit and retain participants with intellectual disability aged 40+ years, for a longitudinal study comprising four data collection waves over more than a decade, are reported. Recruitment and retention outcomes are assessed alongside factors of successful implementation. OUTCOMES AND RESULTS: A nationally representative sample of 753 individuals with intellectual disability was recruited for wave 1 of the study. Multiple retention strategies aimed to reduce barriers to participation and create a project community and study bond, underpinned by a Values Framework and commitment to PPI. After four waves over 11 years, 87.1 % of surviving participants were retained. CONCLUSIONS AND IMPLICATIONS: Successful recruitment and retention of people with intellectual disabilities in longitudinal studies is possible when the approach taken is personal, flexible, and innovative; participant burden is minimised; the research team is skilled and sensitive to needs of participants; and where involvement of the study population guides development and implementation of specific and bespoke strategies.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey.

Background:  The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

The prevalence, awareness, treatment, and control of hypertension in older adults with an intellectual disability in Ireland: a cross sectional study.

AIMS: Hypertension is a leading risk factor for cardiovascular disease, accounting for almost 50% of ischaemic heart disease mortality. This study aims to identify the prevalence, awareness, treatment, and control of hypertension and their predictors in older adults with an intellectual disability (ID). METHODS AND RESULTS: This cross-sectional study utilized data from the ID Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Participants were drawn from the nationally representative sample and included those who completed the self/informant report measures, in addition to objective blood pressure (BP) measurement. From the 551 individuals with ID, aged ≥40 years, hypertension prevalence was 35.2% [95% confidence interval (CI) 31.2-39.2%]. Of those with hypertension, 44.3% (95% CI 37.1-51.5%) were aware of their hypertensive status, and 64.2% (95% CI 57.3-71.1) were taking antihypertensive medication. Among those on treatment, 70.8% (95% CI 61.8-78.2%) had their BP controlled to below 140/90 mmHg. Significant predictors of awareness were age (P = 0.036) and level of ID (P = 0.004), predictors of treatment were age (P = 0.002), level of ID (P = 0.019), and diabetes (P = 0.001). Both diabetes and female gender were predictors of control of hypertension (P = 0.013 and P = 0.037, respectively). CONCLUSION: The prevalence of hypertension in older adults with ID was lower than reports for the general Irish population, with overall levels of treatment and control, when identified, higher in the ID population. There was under-treatment and lower levels of awareness among those with more severe ID, which requires addressing. The finding, that when diagnosed, people with ID respond well to treatment should encourage addressing the under-treatment found here.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland.

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home to isolate, most often (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants' health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.

Sedentary behaviour levels in adults with an intellectual disability: a systematic review and meta-analysis.

Background: Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on safe levels of SB. Adults with an intellectual disability (ID) have poorer health than their counterparts in the general population with higher rates of multi-morbidity, inactivity, and obesity. The reasons for this health disparity are unclear however it is known that SB and overall inactivity contribute to poorer health. There is no clear picture of the levels of SB among individuals with ID therefore SB levels in this vulnerable population need to be examined. The aim of this systematic review is to investigate the prevalence of sedentary behaviour in adults with an ID.   Methods: The PRISMA-P framework was applied to identify high quality articles. An extensive search was carried out in four databases and grey literature sources . In total, 1,972 articles were retrieved of which 48 articles went forward for full review after duplicate removal and screening by title and abstract. The National Institute of Health's quality assessment tools were used to assess article quality. Two reviewers independently assessed each article. An excel spreadsheet was created to guide the data extraction process. The final review included 25 articles. A meta-analysis was completed using REVMAN.   Results: Different SB assessment types were identified in studies. These included steps, time, questionnaires, and screen time. Studies were heterogeneous. Observed daily steps per individual ranged from 44 to above 30,000, with an average of approximately 6,500 steps. Mean daily time spent in SBs was more than 60% of available time, with observed screen time of more than 3 hours.  Conclusion: There is a high prevalence of SB in adults with an intellectual disability.   [Registration no: Index CRD42020177225].

Medication burden and frailty in older adults with intellectual disability: An observational cross-sectional study.

PURPOSE: Recently, efforts have been made to quantify frailty among older adults with intellectual disability (ID). Medication exposure is associated with frailty among older adults without ID. However, there is little research on this association among older adults with ID. The aim of this study was to examine specifically in people with ID the association between frailty and medication exposure, including anticholinergic and sedative medication exposure. METHODS: Data were drawn from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative study of older adults with ID in Ireland. A modified version of Fried's frailty phenotype was constructed. Drug burden measures were polypharmacy, Drug Burden Index (DBI), Anticholinergic Cognitive Burden (ACB) and Sedative Load Model. Multinomial logistic regression was used to calculate odds ratios (ORs) and identify associations between frailty and drug burden. RESULTS: This study included 570 participants with ID. Excessive polypharmacy (use of ≥10 medications) was significantly associated with being pre-frail (P = .017; OR = 2.56; 95% confidence interval [CI] 1.19-5.50) and frail (P < .001; OR 7.13; 95% CI 2.81-18.12), but DBI, ACB or Sedative Load score were not significantly associated with frailty status (P > .05). CONCLUSIONS: This is the first study to examine frailty and its association with medication use including anticholinergic and sedative medication burden among older adults with ID. Further research is required to investigate frailty as measured by other frailty models in relation to medication burden in older adults with ID.

Sedentary behaviour levels in adults with an intellectual disability: a systematic review protocol.

Background: Sedentary behaviour contributes to non-communicable diseases, which account for almost 71% of world deaths. Of these, cardiovascular disease is one of the largest causes of preventable death. It is not yet fully understood what level of sedentary behaviour is safe. People with an intellectual disability have poorer health than the general population with higher rates of multi-morbidity, obesity and inactivity. There is a paucity of evidence on whether this poorer health is due to sedentary behaviour or physical inactivity. This systematic review will investigate the sedentary behaviour levels of adults with an intellectual disability. Method: The PRISMA-P framework will be applied to achieve high-quality articles. An extensive search will be conducted in Medline, Embase, psycINFO and Cinahl and grey literature sources. All articles will be independently reviewed by two reviewers and a third to resolve disputes. Initially, the articles will be reviewed by title and abstract and then the full article will be reviewed using stringent inclusion criteria. All article data will be summarised in a standardised tabular format. The National Institute of Health's quality assessment tool will be used to assess article quality. GRADE will be used to assess the quality of the evidence. The primary outcome of interest is the prevalence of sedentary behaviour levels for people with an intellectual disability. The definition of sedentary behaviour to be used for the purposes of this study is: 'low physical activity as identified by metabolic equivalent (MET) or step levels or as measured by the Rapid Assessment of Physical activity questionnaire (RAPA) or the International Physical Activity questionnaire (IPAQ) or sitting for more than 3 hours per day'. Conclusion: This systematic review will provide a critical insight into the prevalence of sedentary behaviour in adults with an intellectual disability.

Communication difficulties in adults with Intellectual Disability: Results from a national cross-sectional study.

BACKGROUND: People with an intellectual disability (ID) are vulnerable to communication impairments, with consequences for employment, education, and social participation. AIMS: To identify the communication skills of a population of adults (40+ years) with ID and explore relationships between individual and environmental factors and communication skills. METHODS AND PROCEDURES: Data from a sample of 601 adults with ID was selected from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) addressing communication characteristics, demographics, co-morbidities, challenging behaviours, and social participation. A multiple regression model and a decision-making tree were built to identify factors related to communication abilities. OUTCOMES AND RESULTS: Overall, 57.9 % of participants experienced communication difficulties, with 23.5 % reporting severe difficulties. Only 75.1 % of participants communicated verbally; more than half found communicating with professionals and non-familiar partners difficult. Level of ID, low social participation, challenging behaviours, and diagnosis of Down syndrome were significantly associated with communication difficulties. CONCLUSIONS AND IMPLICATIONS: Communication difficulties are prevalent in adults with ID and are influenced by complex factors. Interventions to enhance interaction and quality of life of individuals with ID should consider communication opportunities, needs, and barriers.

Association of Drug Burden Index with grip strength, timed up and go and Barthel index activities of daily living in older adults with intellectual disabilities: an observational cross-sectional study.

BACKGROUND: Drug Burden Index (DBI), a measure of exposure to medications with anticholinergic and sedative activity, has been associated with poorer physical function in older adults in the general population. While extensive study has been conducted on associations between DBI and physical function in older adults in the general population, little is known about associations in older adults with intellectual disabilities (ID). This is the first study which aims to examine the association between DBI score and its two sub-scores, anticholinergic and sedative burden, with two objective measures of physical performance, grip strength and timed up and go, and a measure of dependency, Barthel Index activities of daily living, in older adults with ID. METHODS: Data from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) was analysed. Analysis of Covariance (ANCOVA) was used to detect associations and produce adjusted means for the physical function and dependency measures with respect to categorical DBI scores and the anticholinergic and sedative sub-scores (DBA and DBS). RESULTS: After adjusting for confounders (age, level of ID, history of falls, comorbidities and number of non-DBI medications, Down syndrome (grip strength only) and gender (timed up and go and Barthel Index)), neither grip strength nor timed up and go were significantly associated with DBI, DBA or DBS score > 0 (p > 0.05). Higher dependency in Barthel Index was associated with DBS exposure (p < 0.001). CONCLUSIONS: DBI, DBA or DBS scores were not significantly associated with grip strength or timed up and go. This could be as a result of established limitations in physical function in this cohort, long-term exposure to these types of medications or lifelong sedentary lifestyles. Higher dependency in Barthel Index activities of daily living was associated with sedative drug burden, which is an area which can be examined further for review.

Prevalence and patterns of antipsychotic use and their associations with mental health and problem behaviours among older adults with intellectual disabilities.

BACKGROUND: There are concerns that antipsychotics may be used inappropriately in adults with intellectual disability for problem behaviours in the absence of a diagnosed mental health condition. The aim was to examine the prevalence and patterns of antipsychotic use and their association with problem behaviours and mental health conditions in older adults with intellectual disability. METHODS: Cross-sectional data were drawn from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Medication data were available for 95.6% (n = 677). Those who reported antipsychotic use and reported psychotic or other mental health conditions and those who reported problem behaviours were compared. RESULTS: In total, 45.1% (n = 305) had antipsychotics, and of those with antipsychotic use and diagnosis information (n = 282), 25.9% (73) had a psychotic disorder. 58% of those exposed to antipsychotics reported problem behaviours. CONCLUSION: Reported use of antipsychotics significantly exceeded reported doctor's diagnosis of psychotic conditions in this study.

Quantitative examination of the bone health status of older adults with intellectual and developmental disability in Ireland: a cross-sectional nationwide study.

OBJECTIVES: (1) To investigate the prevalence of osteopenia and osteoporosis among adults with intellectual disabilities (IDs) and (2) to examine alternative optimal bone screening techniques. DESIGN: Observational cross-sectional study. SETTING: Wave 2 (2013-2106) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing. PARTICIPANTS: A national representative sample of 604 male and female persons with ID aged 43 years and over. In total, 575 participants completed quantitative ultrasound (QUS) measurements for one or both feet. OUTCOME MEASURES: Participants underwent health assessments consisting of eight objective health measures including the standardised QUS of the calcaneus bone using a GE Lunar Achilles. A preinterview questionnaire and face-to-face interview were also completed. RESULTS: Objectively QUS identified poorer rates of bone health in people with ID overall with 74% indicating evidence of osteopenia (33.2%) or osteoporosis (41%). Females scored lower than males in the QUS t-scores -2.208 (±1.77) versus -1.78(±1.734). Bone status was stratified by gender (p=0.114), age (p=0.003), level of ID (p<0.0001) and living circumstance (p<0.0001). CONCLUSIONS: This study has shown the prevalence of poor bone health in people with ID is substantial implying an increased risk of fracture due to reduced skeletal integrity. QUS screening has been shown to be useful when combined with clinical risk factors.

How best to support individuals with IDD as they become frail: Development of a consensus statement.

BACKGROUND: While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. METHOD: An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. RESULTS: There is agreement that person-centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. CONCLUSION: The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised.