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.

Prevalence and incidence of cancer amongst adults with intellectual disability - a systematic review and meta-analysis protocol.

Background: People with intellectual disabilities have poorer health and die earlier than their peers without identified disabilities. This difference represents a significant inequality. Until recently, it was considered that cancer was less common in this population, mainly because they did not live long enough to develop age-related cancers. However, recent evidence has identified that people with intellectual disabilities may be at an increased risk of developing cancer but more likely to present for medical treatment at a later stage when cancer has spread. Nonetheless, the evidence is lacking and there is a need to understand the prevalence and incidence of cancer and subtypes of cancer in adults with intellectual disabilities. Methods: A systematic review and meta-analysis will be undertaken to investigate the prevalence and incidence of cancer and subtypes of cancer in adults with an intellectual disability. The JBI Systematic reviews of prevalence and incidence and the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed to develop this protocol. Electronic databases will be searched using predefined search terms to identify relevant studies using the Condition Context Population (CoCoPop) framework. Eligible studies should be observational and have published baseline data that have estimated or presented data on the prevalence or incidence of cancer in adults with intellectual disabilities. To assess the methodological quality of studies included in this review a modified version of the JBI Critical Appraisal Checklist for Studies Reporting Prevalence Data will be used. Prevalence and incidence proportions will be analysed separately with individual study data being pooled using the DerSimonian-Laird proportion method and a random effects meta-analysis will be undertaken. Discussion: This review will advance the epidemiological evidence to identify where targeted cancer care interventions are needed to help reduce the inequalities that this population experiences. Systematic review registration: PROSPERO registration number: CRD42023423584.

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].

Measuring drug burden in older adults with intellectual disabilities: Critical issues for consideration in finding the optimal measure to improve safety of medicines use.

Older adults with Intellectual Disability have been described as among the most medicated groups in society, with rates of polypharmacy significantly exceeding that of the general population. They are at heightened risk of medication-related harm and have high exposure to high-risk medications, for example, anticholinergic ad sedative medicines. There has been significant controversy internationally relating to the inappropriate use of antipsychotics for challenging behavior, often in the absence of a psychiatric diagnosis. Despite this, the evidence base of the safety of use of medicines in this population is lacking, the provision of healthcare is often suboptimal and this population is often excluded from Randomized Controlled Trials. In this editorial, we describe the unique challenges in ensuring safe and appropriate medicines in this population. We describe tools to date that has been used in this population to measure the burden of medicines that increase the risk of adverse outcomes. We outline current and future developments required to improve the quality and safety of medicines use in this population, for example, longitudinal cohort studies.

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.

The use of proton pump inhibitors among older adults with intellectual disability: A cross sectional observational study.

BACKGROUND: Older people with Intellectual Disability (ID) have a high prevalence of gastrointestinal conditions such as Gastro-Oesophageal Reflux Disease (GORD). However, despite this, information about treatment, in particular the use of Proton Pump Inhibitors (PPIs), in this population is sparse and limited. OBJECTIVE: To investigate the prevalence and pattern of PPI use among older people with ID. METHOD: Data on PPI use and key demographics was analysed from Wave 2 (2013/2014) of IDS-TILDA, a nationally representative longitudinal study of 677 participants aged 40 years and above in Ireland. Descriptive statistics, bivariate analyses and binary logistic regression were carried out. RESULTS: Just over a quarter, 27.9% (n = 189), of participants reported use of PPIs, and 53.4% (n = 101) were female. The largest proportion of PPI users (53.4%) were aged between 50 and 64 yrs. Most of the PPIs were used in maximum doses (66.7%). However only 43.9% of PPI users had an indication for PPI use (GORD, stomach ulcer or/and an NSAID use), and further 13.2% were also taking an antiplatelet agent. Use among those in residential care homes (54.3%) was much higher than for those living independently or with family (7%). PPI use among those who have severe/profound ID was 25% higher than those with mild ID. Information about the length of PPI use was missing for 31.2%, but of those with data, just over half recorded using the PPIs for more than a year. Apart from an indication, the factors associated with PPI use were older ages (≥50 years), severe/profound level of ID. CONCLUSION: PPI use among older people with intellectual disability is prevalent and frequently long term, often without a clear indication. PPI use especially among those with severe/profound ID and those who live in residential care homes, could predispose these individuals to additional comorbidities and in order to avoid inappropriate long term of use regular review is required.

Medication use and potentially inappropriate prescribing in older adults with intellectual disabilities: a neglected area of research.

It is known that for all adults, prevalence of potentially inappropriate prescribing (PIP) and polypharmacy increases with advancing age and morbidity. This has been associated with adverse drug reactions and poor outcomes. As a result, screening tools have been developed to identify PIP and to improve prescribing and health outcomes. A growing body of evidence supports the fact that there are even greater concerns among older adults with intellectual disability (ID) who are living longer than before but still have premature mortality and poorer health outcomes compared with the general population. They have different patterns of multimorbidity, with higher rates of epilepsy and mental health conditions. Polypharmacy is prevalent and some prescribing practices may be inappropriate. High exposure to anticholinergic and sedative medicines has additional adverse effects on quality of life. There may also be underutilization of clinically needed therapies. There has been substantial controversy internationally relating to extensive use of psychotropic medicines, particularly off-label use for challenging behaviours. Despite the mounting evidence and concerns about the impact of PIP on quality of life, health and safety for people with ID, appropriate methods to measure PIP are lacking, which represents an important gap in the research literature. Differences in morbidity and medicines use patterns in this population mean instruments used to identify inappropriate medicines in the older population are not suitable. In this perspective article we outline the specific health and medicinal needs for people with ID, the prevalence of polypharmacy and presentation of chronic health conditions in older adults with ID. We provide an overview of the psychotropic medicine classes most frequently used in people with ID which carry substantial risk. We highlight studies to date that have attempted to assess PIP and present research priorities to improve prescribing, health outcomes and quality of life for people with ID.

Medication and supplement use in older people with and without intellectual disability: An observational, cross-sectional study.

INTRODUCTION: Understanding the medication and supplement use of aging people is critical to ensuring that health service providers in primary care can optimise use of these agents. An increasing number of people with different levels of intellectual disability (ID) are living in the community and becoming for the first time substantial users of primary health care services. This, however, brings new challenges that need to be addressed at the primary health care level. We quantified the use of medicines and food supplements and described the associated patterns of morbidity in the two comparable cohorts of aging population with and without intellectual disability. METHOD: This research aligned participants of 50 years and over who lived in the community from two nationally representative cohorts of older people; those with ID from the Intellectual Disability Supplement (n = 238) and those without ID (n = 8,081) from the Irish Longitudinal Study on Ageing. RESULTS: Data showed that both medication and supplement use in the two groups was prevalent but that those with ID received more of both medications and supplements (e.g. polypharmacy was 39.0% in ID vs. 18.1% in non-ID cohort). Moreover, based on an analysis of the therapeutic groups and medications used that treatment was more intense in the ID cohort (95.8 vs. 7.0 International Non-proprietary Names per 100 participants). Supplement use was almost twice as prevalent in the ID group but substantially less diverse with only 10 types of supplements reported. Morbidity was higher in the ID group and showed a higher prevalence of neurological and mental health disorders. CONCLUSION: The results highlight that the burden of therapy management and the potential risks in those ageing with ID differs substantially from those ageing without ID. Understanding the medication and supplement use of people aging with intellectual disability (ID) is critical to ensuring that health service providers in primary/ambulatory care can optimise use of these agents.

Health and Health-Care Utilization of the Older Population of Ireland: Comparing the Intellectual Disability Population and the General Population.

BACKGROUND/OBJECTIVES: Largely unresearched are the similarities and differences compared to the general population in the aging of people with an intellectual disability (ID). Data reported here compare the health and health-care utilization of the general aging population in Ireland with those who are aging with ID. DESIGN: Data for comparisons were drawn from the 2010 The Irish Longitudinal Study on Ageing (TILDA) and the Intellectual Disability Supplement (IDS)-TILDA Wave 1 data sets. SETTING: TILDA participants were community dwelling only while IDS-TILDA participants were drawn from community and institutional settings. PARTICIPANTS: TILDA consists of a sample of 8,178 individuals aged 50 years and older who were representative of the Irish population. The IDS-TILDA consists of a random sample of 753 persons aged 40 and older. Using age 50 as the initial criterion, 478 persons with ID were matched with TILDA participants on age, sex, and geographic location to create the sample for this comparison. MEASUREMENTS: Both studies gathered self-reported data on physical and mental health, behavioral health, functional limitations, and health-care utilization. RESULTS: Rates of chronic disease appeared higher overall for people with ID as compared to the general population. There were also age-related differences in the prevalence of diabetes and cancer and different rates of engagement between the two groups in relevant behavioral health activities such as smoking. There were higher utilization levels among IDS-TILDA participants for allied health and general practitioner visits. CONCLUSION: Different disease trajectories found among IDS-TILDA participants raise concerns. The longitudinal comparison of data for people with ID and for the general population offered a better opportunity for the unique experiences of people with ID to be included in data that inform health planning.

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

BACKGROUND: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. METHODS: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. RESULTS: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. CONCLUSIONS: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

Factors associated with polypharmacy and excessive polypharmacy in older people with intellectual disability differ from the general population: a cross-sectional observational nationwide study.

OBJECTIVES: (1) To evaluate the prevalence of polypharmacy (5-9 medicines) and excessive polypharmacy (10+ medicines) and (2) to determine associated demographic and clinical characteristics in an ageing population with intellectual disabilities (IDs). DESIGN: Observational cross-sectional study. SETTING: Wave One (2009/2010) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). PARTICIPANTS: A nationally representative sample of 753 persons with ID, aged between 41 and 90 years. Participants/proxy reported medicines (prescription and over the counter) taken on a regular basis; medication data was available for 736 participants (98%). MAIN OUTCOME MEASURES/INTERVENTIONS: Participants were divided into those with no polypharmacy (0-4 medicines), polypharmacy (5-9 medicines) and excessive polypharmacy (10+ medicines). Medication use patterns were analysed according to demographic variables and reported chronic conditions. A multinomial logistic regression model identified factors associated with polypharmacy (5-9 medicines) and excessive polypharmacy (≥10 medicines). RESULTS: Overall, 90% of participants reported use of medicines. Polypharmacy was observed in 31.5% of participants and excessive polypharmacy in 20.1%. Living in a residential institution, and reporting a mental health or neurological condition were strongly associated with polypharmacy and excessive polypharmacy after adjusting for confounders, but age or gender had no significant effect. CONCLUSIONS: Polypharmacy was commonplace for older adults with ID and may be partly explained by the high prevalence of multimorbidity reported. Review of appropriateness of medication use is essential, as polypharmacy places ageing people with ID at risk of adverse effects.

Policy analysis: palliative care in Ireland.

Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation.

Patterns of multimorbidity in an older population of persons with an intellectual disability: results from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA).

UNLABELLED: Multimorbidity (2 or more chronic conditions) is being widely studied in older populations and this study explores both the relevance of emerging conceptualizations and the extent to which multimorbidity is a feature of aging in persons with an intellectual disability. METHODS: Data was generated from wave one of the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA) which included 753 persons with an ID aged 40 years and over. Information on the presence of 12 chronic conditions was collected using a standardized protocol administered in face to face interviews with persons with ID and/or their caregivers. Prevalence of multimorbidity was established and patterns were examined using logistic regression models. The patterns of multimorbidity for people with ID that emerged were then compared with those reported for other older adults. RESULTS: Multimorbidity was established for 71% of the IDS-TILDA sample with women at highest risk and rates of multimorbidity was high (63%) even among those aged 40-49 years. Eye disease and mental health problems were most often associated with a second condition and the most prevalent multimorbidity pattern was mental health/neurological disease. DISCUSSION: Further investigation, attention to mental health issues and the development of treatment guidelines that recognize chronic condition disease load are critical to mitigating the negative impact of multiple chronic conditions and preventing additional disability in adults with ID as they age.