Article

Development of a frailty index for older people with intellectual disabilities: Results from the HA-ID study

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Abstract

Background: Although there is no strict definition of frailty, it is generally accepted as a state of high vulnerability for adverse health outcomes at older age. Associations between frailty and mortality, dependence, and hospitalization have been shown. We measured the frailty level of older people with intellectual disabilities (ID). Furthermore variation in gender, age, and level of ID were identified. Results were compared to a frailty study in the general European population. Methods: This research elaborates on a large cross-sectional study: Healthy Ageing with Intellectual Disability (HA-ID). Nine hundred-eighty-two men and women (≥ 50 yr) with ID were included. Based on the collected data, we developed a frailty index with 51 health-related deficits, and calculated a frailty index score between 0 and 1 for each individual. Deficits included physical, social and psychological problems. Results: The mean frailty index score was 0.27 (standard deviation .13). Frailty was positively correlated with age (r=0.297, p<.001). More severe ID was associated with higher frailty scores (β=0.440, p<001). The upper limit of the FI was 0.69, which was consistent for all age categories. Conclusion: As people with ID are getting older, the question whether additional years are spent in good health becomes salient. Here, people with ID over age 50 had frailty scores similar to most elderly people over 75 y. Future research is needed to confirm if frail elderly people with ID have an increased risk of adverse health outcomes.

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... As one of the largest epidemiological studies on health in aging adults with intellectual disabilities, the HA-ID study provided the necessary data to develop a Frailty Index specifically for this population (the IDfrailty index) (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2013). This ID-frailty index includes items across different domains of health that do predict morbidity and mortality in individuals with ID (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2015). ...
... In this retrospective analysis, we calculated frailty scores using the CFS (Rockwood et al., 2005) and the ID-frailty index (Schoufour et al., 2013) for the original cohort of 982 aging adults with ID (aged 50 years and over) of the HA-ID study (data collected during 2009-15, recruitment and participant characteristics described elsewhere (Hilgenkamp, Bastiaanse, et al., 2011, Schoufour et al., 2013). We used the previously collected baseline data on the ability to perform activities of daily living in the sample to classify the individuals with ID according to the CFS . ...
... In this retrospective analysis, we calculated frailty scores using the CFS (Rockwood et al., 2005) and the ID-frailty index (Schoufour et al., 2013) for the original cohort of 982 aging adults with ID (aged 50 years and over) of the HA-ID study (data collected during 2009-15, recruitment and participant characteristics described elsewhere (Hilgenkamp, Bastiaanse, et al., 2011, Schoufour et al., 2013). We used the previously collected baseline data on the ability to perform activities of daily living in the sample to classify the individuals with ID according to the CFS . ...
Article
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Background Across the world, frailty is part of the guidelines that are being developed in the COVID‐19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age‐related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustifiably exclude individuals with ID from IC treatment. Our objective was to compare the classification of individuals with ID into different frailty categories based on the CFS and the well‐studied ID‐frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID‐19 pandemic. Methods This retrospective analysis of the observational healthy aging and intellectual disabilities (HA‐ID) study included 982 individuals with ID of ≥50 years, who were classified according to the CFS and the ID‐frailty index. Results Of the cohort of 982 older adults with ID, 626 (63.7%) would be classified as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID‐frailty index. Furthermore, 199 (20.3%) would be classified as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID‐frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classified by the CFS as too frail to have a good probability of survival. The ID‐frailty index predicts mortality better than the CFS in individuals with ID. Conclusions Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision‐making during the COVID‐19 pandemic. We strongly recommend using the ID‐frailty index when assessing probability of survival for individuals with ID.
... Sixty-eight participants were excluded from the analysis as they had less than 30 known deficits . The excluded participants did not differ significantly from the included participants with respect to baseline characteristics (sex, age, level of ID, presence of Down syndrome) (Schoufour et al., 2013). No weighting of variables was applied, so each deficit contributed equally to the frailty index score. ...
... The outcomes showed the same characteristics as seen in the general population: skewed distribution, correlation with age, and an observed top frailty index score of around 0.7. Further robustness was demonstrated by correlating 50 frailty indices based on random selections of 75% of the deficits, with age, showing that the index's correlation with age was not influenced by the choice of deficits, which shows structural validity (Schoufour et al., 2013). Compared with the general European population (50+), it appears that people with ID accumulate more deficits and that this accumulation starts at much younger age (Romero-Ortuno & Kenny, 2012; Theou, Brothers, & Rockwood, 2013) (Figure 1). ...
... The lower lines represent the average frailty index per age category and the corresponding trend line from a large 50+ general European population (Romero-Ortuno & Kenny, 2012). Reproduced from Research in Developmental Disabilities (Schoufour et al., 2013). ...
A frailty index is a quantitative measure of frailty, based on the nonspecific accumulation of deficits. In the general population the frailty index strongly predicts death and deterioration of independence and health. Few studies focus on frailty in people with intellectual disabilities (ID). However, because of the increasing longevity of people with ID, frailty will become a major healthcare challenge in this population. Here we argue the benefits of using a frailty index to measure frailty in people with ID, as it was suggested that this tool would lead to flawed results in this specific population. Most important, as the exact content of the frailty index is relatively free, the frailty index can include problems that are often present in the ID population, as well as use diagnostic questionnaires that have been validated in people with ID. In addition, as the frailty index is designed using a well-evaluated standardized procedure, results can be compared to the general population. The frailty index is applicable to the ID population and predicts negative health outcomes, making it a useful instrument for policy and research. However, further research on its clinical applicability is required.
... Despite living longer, adults with intellectual and developmental disabilities experience "premature aging," showing physiological, social, and cognitive signs of aging earlier than what is seen in the general population (B eange, 2002;Lifshitz & Merrick, 2004;Stax, Luciano, Dunn, & Quevedo, 2010). For example, 'as young as 50' , adults with intellectual and developmental disabilities experience levels of vulnerability not experienced until age 80 in the general population (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2013). ...
... To characterize health complexity, some who study the aging process in adults with IDD have turned to measures of frailty (Brehmer-Rinderer, Zeilinger, Radaljevic, & Weber, 2013;Schoufour et al., 2013). Frailty is generally viewed as "a loss of resources in several domains of functioning, [leading] to a declining reserve capacity for dealing with stressors" (Gobbens, Luijkx, Wijnen-Sponselee, & Schols, 2010, p. 339). ...
... Some limitations must be acknowledged. First, the severity of intellectual and developmental disabilities is not known in our cohort, which is likely associated with level of frailty Schoufour et al., 2013). Second, there is evidence that the Frailty Marker may not be the ideal measure of frailty in this population. ...
Article
Adults with intellectual and developmental disabilities often experience premature aging and high levels of frailty. Frailty characterizes health complexities and identifies adults with increased risks for adverse outcomes. This paper compared the prevalence of frailty amongst adults (aged 18–99 years) with and without intellectual and developmental disabilities. Frailty was measured using the Frailty Marker, based on the Adjusted Clinical Groups-Predicative Model, and was compared between a cohort of 51,138 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual developmental disabilities. Approximately 9% of persons with intellectual and developmental disabilities were frail, compared to only 3% of persons without intellectual and developmental disabilities. Women, older adults, and adults with mental illness or addiction(s), were more likely to be frail. Adults with intellectual and developmental disabilities are increasingly vulnerable as they age. However, to appropriately characterize frailty in this population, measures should be more inclusive of health characteristics and fluctuations that are related to frailty. Future research should investigate alternative measures of frailty for persons with intellectual and developmental disabilities, including measures derived from standardized health assessments, to meet the needs of the aging population. © 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.
... Almost 1 % of the population has an IDD [3,4], which the World Health Organization defines as "a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills" (page 177) [5]. These conditions originate before the age of 18 years [6], with the expectation of lifelong disability.The risk of health problems is greater among persons with IDD [7], and these contribute to the widely held notion that this group experiences premature aging, where 50 years may be considered "old" [8][9][10][11][12]. ...
... The frailty phenotype approach to measuring frailty is limited in that it focuses on physical limitations, which are known to be more common in individuals with IDD regardless of age [10]. Others have noted that the strong influence of low mobility on frailty phenotype scores may lead to misclassification in the general population [21]; this may also lead to misclassification among those with IDD [10], who have higher rates of mobility limitations across the lifespan. ...
... The frailty phenotype approach to measuring frailty is limited in that it focuses on physical limitations, which are known to be more common in individuals with IDD regardless of age [10]. Others have noted that the strong influence of low mobility on frailty phenotype scores may lead to misclassification in the general population [21]; this may also lead to misclassification among those with IDD [10], who have higher rates of mobility limitations across the lifespan. ...
Article
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Background The aging population of adults with intellectual and developmental disabilities (IDD) is growing. In the general aging population, frailty is commonly used to predict adverse health outcomes, including hospital use, death, and admission to long-term care. However, existing frailty measures are less appropriate for aging persons with IDD, given their pre-existing conditions and limitations. An accumulation of deficits approach, which is now widely used to describe frailty in the general population, may be more suitable for persons with IDD. Frailty measures specific to persons with IDD have not been widely studied. Methods Using pre-determined criteria, a frailty index (FI) specific to persons with IDD was developed based on items in the Resident Assessment Instrument - Home Care (RAI-HC), and using the assessments of 7,863 individuals with IDD in Ontario (aged 18–99 years) admitted to home care between April 1st, 2006 and March 31st, 2014. FI scores were derived by dividing deficits present by deficits measured, and categorized into meaningful strata using stratum-specific likelihood ratios. A multinomial logistic regression model identified associations between frailty and individual characteristics. Results The resulting FI is comprised of 42 deficits across five domains (physiological, psychological, cognitive, social and service use). The mean FI score was 0.22 (SD = 0.13), equivalent to 9 deficits. Over half of the cohort was non-frail (FI score < 0.21), while the remaining were either pre-frail (21 %, FI score between 0.21 and 0.30) or frail (27 %, FI score > 0.30). Controlling for individual characteristics, women were more likely to be frail compared to men (OR = 1.39, 95 % CI: 1.23–1.56). Individuals who were frail were significantly more likely to have a caregiver who was unable to continuing caring (OR = 1.86, 95 % CI: 1.55–2.22) or feeling distressed (OR = 1.54, 95 % CI: 1.30–1.83). Living with a family members was significantly protective of frailty (OR = 0.35, 95 % CI: 0.29–0.41), compared to living alone. Conclusions Using the FI to identify frailty in adults with IDD is feasible and can be incorporated into existing home care assessments. This could offer case managers assistance in identifying at-risk individuals. Future analyses should evaluate this measure’s ability to predict future adverse outcomes.
... (33) After over two decades of researching frailty in the general population, discussions regarding using frailty measures to improve health policy and clinical practice have begun to emerge. (34)(35)(36)(37)(38) This is a goal shared by the IDD community; (39,40) however, a better understanding of the current measures used to assess and monitor frailty among community-dwelling adults with IDD is needed. Early identification of frailty in this vulnerable subset of the aging population has the potential to provide an opportunity to put in place needed community supports, which may help to reduce the number of inappropriate admissions to long-term care or institutionalization (re-institutionalization for some). ...
... Seventeen (n = 17) publications of original research published between 2000 and December 31st, 2015 were retrieved that measured frailty in aging adults with IDD (Table 1). These 17 studies present the work of four research groups from the Netherlands (n = 11), (39,(42)(43)(44)(45)(46)(47)(48)(49)(50)(51) Austria (n = 2), (28,33) Canada (n = 3), (5,40,52) and Taiwan (n = 1). (53) This includes grey literature (e.g., theses or dissertations), (42,47,52) although some has since been published in peer-reviewed journals. ...
... The 11 publications from The Netherlands were from the Healthy Ageing with Intellectual Disability (HA-ID) study; these analyzed data from a cohort of 1,050 individuals from care providers in The Netherlands providing specialized support (e.g., ambulatory support, day care, residential settings). (39,(42)(43)(44)(45)(46)(47)(48)(49)(50)(51) The investigators from Austria, as part of the POMONA II project "Health Indicators for People with Intellectual Disabilities", recruited volunteers from eight health areas across the country. (28,33) One Canadian study accessed administratively held health data of individuals with and without IDD in Ontario; (5) the other two Canadian studies accessed data of individuals with IDD who were accessing provincially funded home care in Ontario. ...
Article
Background Individuals with intellectual and developmental disabilities (IDD) are both living longer than in previous generations and experiencing premature aging. Improved understanding of frailty in this aging population may inform community supports and avoid negative outcomes. Methods The objective of this study was to review the literature on frailty and IDD and determine areas for future research and application. The methodological framework for a scoping review as developed by H. Arksey and L. O’Malley was applied to identify and select original studies published since 2000. Results Seventeen studies were identified; these were based on the work of researchers from four research programs. The studies utilized six measures of frailty, including two frailty indices, the VFQ-ID(-R), the frailty phenotype, and the frailty marker. Frailty was equally studied as an outcome and as predictor for other outcomes (e.g., mobility, falls, care intensity, institutionalization, and survival). Conclusions There is evidence of a growing interest in the measurement of frailty in aging adults with IDD. As in the general population, frailty in this group is associated with many negative outcomes. While a few measures have emerged, more work is required to replicate results, validate tools, and test the feasibility of applying frailty measures in practice and to inform policy.
... 'Frailty' has been defined as 'a state of high vulnerability for adverse health outcomes at older age' (Schoufor et al. 2013(Schoufor et al. : 1541. Schoufor et al. studied 982 people with intellectual disabilities aged 50 or over with health-related problems to develop a frailty index. ...
... However, dementia is only one age-related health issue and other areas such as falls management were not mentioned by participants despite osteoporosis occurring in 42.9% of cases in Hermans & Evenhuis' (2014) study and falls being recognized as a significant problem for people with intellectual disabilities (Oppewal et al. 2014). Furthermore, conditions appeared to be addressed singly within training rather than in conjunction despite the high levels of multimorbidity and frailty experienced by older people with intellectual disabilities (Schoufor et al. 2013;Hermans & Evenhuis 2014). This could lead to a situation in which the interaction between different conditions is not understood, symptoms of one could be confused for another, emerging health needs are not identified and inappropriate or inadequate support is provided. ...
Article
Background: Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. Methods: Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. Findings: Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. Conclusions: Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing.
... The consensus definition of older adults in the ID population in research cohorts is over 40 years of age as this sub-group has a significantly lower life expectancy, particularly in association with epilepsy compared to the general population [12]. A cross-sectional study in the Netherlands identified frailty scores in people with ID aged over 50 years that were similar to those in people aged over 75 years in the general population [13]. ...
... Table 2. SUDEP and seizure Safety Checklist. Comparing SUDEP risk factors between older adults with epilepsy and ID and younger adults.[13] Has the patient's epilepsy been reviewed in the last 12 months? ...
Article
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Purpose : People with intellectual disabilities (ID) suffer multimorbidity, polypharmacy and excess mortality at a younger age than general population. Those with ID and epilepsy are at higher risk of worse clinical outcomes than their peers without epilepsy. In the ID population the health profile of those aged ≥40 years can be compared to those aged over 65 in the general population. To date there is limited data available to identify clinical characteristics and risk factors in older adults (≥40 years) with ID and epilepsy. Methods : The Epilepsy in ID National Audit (Epi-IDNA) identified 904 patients with ID and epilepsy from 10 sites in England and Wales. This subsequent analysis of the Epi-IDNA cohort compared the 405 adults over 40 years with 499 adults ≥18 years aged under 40 years. Comparison was made between clinical characteristics and established risk factors using the Sudden Unexpected Death in Epilepsy (SUDEP) and Seizure Safety Checklist. Results : The older adults’ cohort had significantly higher levels of co-morbid physical health conditions, mental health conditions, anti-seizure medications (median 5), and antipsychotics compared to the younger cohort. The older group were significantly less likely to be diagnosed with a co-morbid neurodevelopmental disorder, and to have an epilepsy care plan. Conclusion : This is the largest study to date focused on adults with ID and epilepsy over 40 years. The ≥40 years cohort compared to the younger group has higher levels of clinical risk factors associated with multi-morbidity, potential iatrogenic harm and premature mortality with worse clinical oversight mechanisms.
... As a result, frailty, a state in which older people are prone to negative health outcomes including disability, hospitalisation, institutionalisation and premature death [2], can become a major problem. In people with ID, early onset and high levels of frailty were observed [3], but the underlying pathways leading to the early onset of frailty in this population have not yet been investigated. ...
... An FI score was calculated by the number of present deficits divided by the total number of measurements, resulting in a score ranging from zero (lowest level of frailty) to one (highest level of frailty). A complete list of the deficits, used measurements and cut-off values has been presented elsewhere [3]. Cholesterol, glucose and haemoglobin were originally included in the FI. ...
Article
Introduction: People with intellectual disabilities (ID) are earlier frail than people in the general population. Although this may be explained by lifelong unfavourable social, psychological and clinical causes, underlying physiological pathways might be considered too. Biological measures can help identify pathophysiological pathways. Therefore, we examined the association between frailty and a range of serum markers on inflammation, anaemia, the metabolic system, micronutrients and renal functioning. Methods: Participants (n = 757) with borderline to severe ID (50+) were recruited from three Dutch ID care and support services. Results: Frailty was measured with a frailty index, a measure based on the accumulation of deficits. Linear regression analyses were performed to identify associations between frailty and biochemical measures independent of age, gender, level of ID and the presence of Down syndrome. Frailty appears associated with inflammation (IL-6 and CRP), anaemia, metabolic markers (glucose, cholesterol and albumin) and renal functioning (cystatin-C and creatinine). Discussion: These results are in line with results observed in the general population. Future research needs to investigate the causal relation between biochemical measures and frailty, with a special focus on inflammation and nutrition. Furthermore, the possibility to screen for frailty using biochemical measures needs to be used.
... Negative health outcomes as a result of ageing with lifelong disability mean a risk of more medication, increased sickness and more frequent hospitalisations. The frailty conditions develop in earlier ages in people with ID, which may lead to discrepancies in the use of healthcare compared to the general population (Evenhuis et al., 2012;Gale et al., 2015;Ouellette-Kuntz et al., 2019;Schoufour et al., 2013Schoufour et al., , 2015. The more problems present, the frailer are people with ID compared to the general population of the same age (Schoufour et al., 2013(Schoufour et al., , 2014. ...
... The frailty conditions develop in earlier ages in people with ID, which may lead to discrepancies in the use of healthcare compared to the general population (Evenhuis et al., 2012;Gale et al., 2015;Ouellette-Kuntz et al., 2019;Schoufour et al., 2013Schoufour et al., , 2015. The more problems present, the frailer are people with ID compared to the general population of the same age (Schoufour et al., 2013(Schoufour et al., , 2014. Furthermore, WHO called attention to the fact that older people with ID are a neglected group and at risk of being treated unfairly when it comes to the provision of care and welfare (WHO, 2000). ...
Article
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Affective and anxiety diagnoses are common in older people with intellectual disability (ID). The aim was to describe support and social services for older people with ID and affective and/or anxiety diagnoses, also to investigate in this study group the association between support and social services and frailty factors in terms of specialist healthcare utilisation, multimorbidity, polypharmacy, level of ID and behavioural impairment. Data was selected from four population-based Swedish national registries, on 871 identified persons with affective and/or anxiety diagnoses and ID. Multivariate regression analysis was used to investigate associations between frailty factors during 2002–2012 and social services in 2012. People with multimorbidity who frequently utilised specialist healthcare were less likely to utilise residential arrangements. Those with polypharmacy were more likely utilise residential arrangements, and receive personal contact. People with moderate, severe/profound levels of ID were more likely to utilise residential arrangements and to pursue daily activities.
... Deze toename in levensverwachting betekent echter niet dat ze ook gezond oud worden. Bij ouderen met een verstandelijke beperking wordt een hoge mate van kwetsbaarheid en chronische multimorbiditeit gezien [6,7], en een lage lichamelijke fitheid en mate van zelfredzaamheid [8,9]. Ondanks dat de levensverwachting toeneemt, valt er dus nog winst te behalen in het gezonder oud worden van deze populatie. ...
... Vergeleken met de algemene bevolking ligt ook dit percentage veel hoger. Dit zou mogelijk verklaard kunnen worden doordat mensen met een verstandelijke beperking minder actief en lichamelijk fit zijn, meer chronische gezondheidsaandoeningen en comorbiditeiten hebben, en kwetsbaarder zijn dan de algemene bevolking [7,12,25]. Het risico op achteruitgang bleek groter bij een hogere leeftijd en een ernstigere verstandelijke beperking. ...
Door hervormingen van het zorgstelsel is een deel van de mensen met een verstandelijke beperking (VB) nu aangewezen op de Wet Maatschappelijke Ondersteuning (de gemeente). Kennis over hun zelfredzaamheid, en de afname hiervan tijdens het ouder worden is belangrijk om de zorgverlening voor deze groep goed in te richten. Daarom richt deze studie zich op de achteruitgang in zelfredzaamheid en de relatie met overlijden bij ouderen met een VB (≥50 jaar; n = 703). Zelfredzaamheid werd gedefinieerd als basale en instrumentele activiteiten van het dagelijks leven (ADL en IADL) en mobiliteit (zelfstandig kunnen lopen of niet). Van de deelnemers ging 55 % achteruit in hun ADL, 42 % in IADL, en 38 % in mobiliteit. Het risico op achteruitgang bleek groter bij een hogere leeftijd en een ernstigere VB, maar ook deelnemers met een lichte VB gingen 39 % achteruit in ADL, 55 % in IADL en 27 % in mobiliteit. Een slechtere zelfredzaamheid en mobiliteit waren een sterke voorspeller voor overlijden. Deze grootschalige studie laat een duidelijke achteruitgang zien in de zelfredzaamheid van ouderen met een VB in 3 jaar tijd. Partijen verantwoordelijk voor de zorg voor mensen met een VB moeten bedacht zijn op achteruitgang en zoveel mogelijk inzetten op behoud van de zelfredzaamheid.
... In line with expectations, we found a skewed distribution for the full population and a more normal distribution of the FI-scores for those aged 65 years and over. Also in other studies, more normal distributions and higher means were generally observed when older, institutionalized, disabled or cognitively impaired participants were studied [2,22,23]. We found an absolute maximum of 0.78 for the FI. ...
... Studies published until now, evaluating frailty, replace missing values with the sample mean [20,28], remove missing values from both the numerator and the denominator [23,29], or use single or multiple imputation to replace missing values [30]. Multiple imputation is generally preferred over single imputation since it allows taking into account the added uncertainty due to the missing values by correcting the standard errors of the analysis model, while single imputation treats the imputed values as if they had been observed, which may lead to an underestimation of the standard errors [31]. ...
Article
Objectives: To design a frailty index (FI) and evaluate three methods to handle missing data. Furthermore, we evaluated its construct (i.e., skewed distribution, correlation with age and sub-maximum score) and criterion validity (based on mortality risk). Study design: We included 11,539 participants (45± years) from a population-based cohort in the Netherlands. Frailty was measured with a FI, which we constructed based on the accumulation of 45 health-related variables, related to mood, cognition, functional status, diseases and conditions, biomarkers, and nutritional status. A total FI-score was calculated by averaging the scores of the deficits, resulting in a score between 0 and 1, with higher scores indicating increasing frailty. Mean imputation, single- and multiple imputation were applied. Main outcome measure: Mortality data were obtained by notification from the municipal administration. Median follow-up time was 9.5 years, during which 3902 (34%) participants died. Results: The median FI for the full population was 0.16 (IQR=0.11-0.23). The distribution of the FI was slightly right-skewed, the absolute maximum score was 0.78 and there was a strong correlation with age (Pearson correlation=0.52;95%CI=0.51-0.54). The adjusted HR per unit increase in FI-score on mortality was 1.05 (95%CI=1.05-1.06). Multiple imputation seemed to provide more robust results than mean imputation. Conclusion: Based on our results we advise to the use of at least 30 deficits from different health domains to construct a FI if data are not imputed. Future research should use the continuous nature of the FI to monitor trajectories in frailty and find preventive strategies.
... For example, in their study of 1047 participants with intellectual disabilities aged 50 or over, Hermans and Evenhuis (2014) found that 79.8% had two or more such conditions and 46.8% had four or more. Elsewhere Schoufor et al. (2013) found that people with intellectual disabilities aged over 50 had levels of frailty comparable to those in the wider population aged over 75. This premature ageing is attributed to the impact of pre-existing conditions (e.g. ...
Article
Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health-related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age-related health needs. The semi-structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long-term relationship with those they support was identified as being important to identifying any health-related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health-related communication.
... However, we anticipate that these tools might not be applicable for people with intellectual disabilities because the included general indicators are not specific to them. Furthermore, these tools may not be the norm for people with intellectual disabilities, for example due to an early onset of frailty (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2013) and a high risk of multimorbidity (Hermans & Evenhuis, 2014;McCarron et al., 2013). Next to this, the reliance on included clinical indicators of diseases such as cancer or organ failure may not be applicable as diseases in people with intellectual disabilities may be diagnosed late or may not be diagnosed at all. ...
Article
Background Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. Method We used a five‐stage mixed‐methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5–6 months. Results The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Conclusions PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.
... The items included to generate a DAFI are not fixed, and the particular combination of health deficits used does not affect its utility or applicability, because frailty is interpreted as a loss of redundancy in a complex system. 15,16 Although DAFIs have been created and validated in many population cohorts and settings, [17][18][19][20] it was recently validated in older patients with cancer receiving chemotherapy, where it predicted greater than or equal to grade 3 toxicity, drug discontinuation, and hospitalization, establishing its role in stratification of frailty in an oncology setting. 21 In the current study, we used the Rockwood accumulation of deficit approach to develop a frailty index from data collected in the Medicare Health Outcomes Survey (MHOS) and the SEER-MHOS linked database. ...
Article
Purpose: To develop a frailty index using the Rockwood Accumulation of Deficits approach for the Medicare Health Outcomes Survey (MHOS) and apply it in a subset of older patients with newly diagnosed multiple myeloma. Methods: Data from 2,692,361 patients without cancer, > 66 years of age, in SEER-MHOS linked databases between 1998 and 2009 were analyzed. A frailty index was constructed, resulting in a 25-item scale; cutoff values were created for individuals classified as frail. This frailty index was then applied to 305 patients with newly diagnosed myeloma in the database to predict overall survival. Results: In the derivation cohort of patients without cancer, the median age was 74 years and the mean frailty index was 0.23 (standard deviation, 0.17). Among patients without cancer, each 10% increase in frailty index (approximately three to four more deficits) was associated with a 40% increased risk for death (adjusted hazard ratio, 1.397; 95% CI, 1.396 to 1.399; P < .001). In the cohort of patients with newly diagnosed myeloma, the median age was 76 years an d the mean frailty index was 0.28 (standard deviation, 0.17). Each 10% increase in frailty index was associated with a 16% increased risk for death (adjusted hazard ratio, 1.159; 95% CI, 1.080 to 1.244; P < .001). Fifty-three percent of patients with multiple myeloma were considered frail. The estimated median overall survival of patients considered frail was 26.8 months, compared with 43.7 months (P = .015) for those who were not. Conclusion: The MHOS-based frailty index was prognostic for patients with multiple myeloma in predicting overall survival.
... An index with too few variables, particularly those containing around 10 or less, is inherently unstable (Searle et al., 2008). This requirement for a frailty index to contain ≥ 30 variables has become accepted in the frailty literature (Mitnitski, Song, & Skoog, 2005), with exclusion of those containing less deficits commonplace (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2013). Furthermore, Searle et al have provided guidance on the five important determinants of variables to be used in constructing a frailty index (Searle et al., 2008), which have also become the accepted standard in the subsequent literature by which frailty indexes are measured (Howlett & Rockwood, 2013;McKenzie, Ouellette-Kuntz, & Martin, 2015). ...
Article
Background/objectives: Frail patients are increasingly presenting for both perioperative and intensive care, highlighting the need for simple, valid and scaleable frailty measurement. Frailty indexes comprehensively assess a range of deficits in health, and can incorporate routinely collected data. The purpose of this systematic review was to evaluate the effect of frailty indexes on surgical and intensive care risk stratification and patient outcomes (mortality, complications, length of stay, and discharge location). Methods: A prospectively registered systematic review was performed. MEDLINE, EMBASE, and CINAHL were searched to identify studies enrolling adult surgical or intensive care patients which used a frailty index. Included studies were those published subsequent to 1990, of any study design, which utilised a frailty index consisting of ≥30 health deficits. Primary outcome was mortality; secondary outcomes were complications, length of stay (LOS) and discharge location. Study and frailty index quality were critically appraised by three independent reviewers, with findings narratively described. Results: 2026 articles were screened, from which nine prospective and four retrospective cohort studies (enrolling 2539 patients) were included. Frailty prevalence ranged between 19-62%; frailty indexes identified patients at risk of increased death [mortality rates ranging between 1.9-73.1%; reported odds ratios (ORs) for death ranging between 1.76-3.09 for frail vs. non-frail patients], surgical complications (ORs = 1.67-4.4), increased LOS, and discharge to residential care (ORs = 1.9-3.64). The term "frailty index" was found to be applied to a number of alternative measurement scales. Conclusion: Frail patients are at significantly increased risk in critical illness and the perioperative period. Better standardisation of frailty indexes is recommended.
... Moreover, the assessment of the risk profile of the individual in terms of percentage of deficits the person presents implicitly allows a standardization of the language in the field of aging. In this way, interdisciplinary and across settings comparisons/discussions can be established favoring the integration of information and valorization of backgrounds/experiences [27,28]. ...
Chapter
The world population is aging, and this phenomenon is expected to continue for the next decades. The demographic modifications are substantially altering the socio-economic structure of our societies and pose serious burdens to the sustainability of healthcare systems worldwide. In order to guarantee that models of care are responsive to the novel needs and transformations, it is necessary to invest in new research paradigms that are respectful of the complexity of the aging process. This implies shifting from disease-centered paradigms towards holistic evaluations of the individual, probably focused on the measurement of objective functions. In this chapter, we provide an overview of current issues affecting research on aging and possible solutions that researchers of tomorrow may valorize.
... This tool should be implemented in daily practice to screen people with ID for palliative care needs and should have the potential to start the discussion about the possibility of providing palliative care. For example, in people with a (presumption of) chronic disease in an early stage (e.g., dementia, heart failure), in frail people who show a deterioration in health or functioning (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2015), or from an arbitrary level of age onwards (e.g., >50 years; we know from recent research that people with ID aged 50-59 are as frail as a general population aged 70-79 (Schoufour, Mitnitski, Rockwood, Evenhuis, & Echteld, 2013)). ...
... Within this context, physical fitness has been an increasingly important topic for individuals with intellectual disabilities (ID) [2]. Studies have shown that individuals with ID demonstrate earlier and unhealthier aging than the general population [3][4][5]. This is a strong reason to evaluate physical fitness in relationship to future negative health outcomes in this specific population, and to understand any age-related decline in physical functioning [6][7][8]. ...
Article
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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available. Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results. Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed). Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets. • Implications for rehabilitation • Individuals with intellectual disabilities have low physical fitness levels, and a high risk for unnecessary functional decline and unhealthy aging. • Physical fitness testing could help improve, adapt and evaluate exercise interventions, but is challenging in this population. • This paper proposes a selection of tests (ID-fitscan) with sufficient feasibility, reliability, and validity in this population, and provides reference values to aid interpretation of physical fitness test outcomes in individuals with intellectual disabilities. • The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness, and thereby allowing for a better interpretation of results by using the same tests, and an increasing knowledge of the physical fitness levels of this population.
... 103 Although the association between ID and being underweight in adulthood is generally accepted owing to poor feeding and swallowing, 17 we were not aware of any population estimates of its prevalence. Older patients with ID are known to suffer an earlier onset of frailty than the general population, 104 and our higher prevalence of recorded osteoporosis reflects the high prevalence of low bone quality that has been measured among older patients with ID. 105 A recent Dutch study 98 showed that a low BMI among older patients with ID was predictive of 3-year mortality. ...
Article
Full-text available
Background People with intellectual disability (ID) have poorer health than the general population; however, there is a lack of comprehensive national data describing their health-care needs and utilisation. Annual health checks for adults with ID have been incentivised through primary care since 2009, but only half of those eligible for such a health check receive one. It is unclear what impact health checks have had on important health outcomes, such as emergency hospitalisation. Objectives To evaluate whether or not annual health checks for adults with ID have reduced emergency hospitalisation, and to describe health, health care and mortality for adults with ID. Design A retrospective matched cohort study using primary care data linked to national hospital admissions and mortality data sets. Setting A total of 451 English general practices contributing data to Clinical Practice Research Datalink (CPRD). Participants A total of 21,859 adults with ID compared with 152,846 age-, gender- and practice-matched controls without ID registered during 2009–13. Interventions None. Main outcome measures Emergency hospital admissions. Other outcomes – preventable admissions for ambulatory care sensitive conditions, and mortality. Data sources CPRD, Hospital Episodes Statistics and Office for National Statistics. Results Compared with the general population, adults with ID had higher levels of recorded comorbidity and were more likely to consult in primary care. However, they were less likely to have long doctor consultations, and had lower continuity of care. They had higher mortality rates [hazard ratio (HR) 3.6, 95% confidence interval (CI) 3.3 to 3.9], with 37.0% of deaths classified as being amenable to health-care intervention (HR 5.9, 95% CI 5.1 to 6.8). They were more likely to have emergency hospital admissions [incidence rate ratio (IRR) 2.82, 95% CI 2.66 to 2.98], with 33.7% deemed preventable compared with 17.3% in controls (IRR 5.62, 95% CI 5.14 to 6.13). Health checks for adults with ID had no effect on overall emergency admissions compared with controls (IRR 0.96, 95% CI 0.87 to 1.07), although there was a relative reduction in emergency admissions for ambulatory care-sensitive conditions (IRR 0.82, 95% CI 0.69 to 0.99). Practices with high health check participation also showed a relative fall in preventable emergency admissions for their patients with ID, compared with practices with minimal participation (IRR 0.73, 95% CI 0.57 to 0.95). There were large variations in the health check-related content that was recorded on electronic records. Limitations Patients with milder ID not known to health services were not identified. We could not comment on the quality of health checks. Conclusions Compared with the general population, adults with ID have more chronic diseases and greater primary and secondary care utilisation. With more than one-third of deaths potentially amenable to health-care interventions, improvements in access to, and quality of, health care are required. In primary care, better continuity of care and longer appointment times are important examples that we identified. Although annual health checks can also improve access, not every eligible adult with ID receives one, and health check content varies by practice. Health checks had no impact on overall emergency admissions, but they appeared influential in reducing preventable emergency admissions. Future work No formal cost-effectiveness analysis of annual health checks was performed, but this could be attempted in relation to our estimates of a reduction in preventable emergency admissions. Funding The National Institute for Health Research Health Services and Delivery Research programme.
... For instance, middle-aged adults with IDD are at greater risk of vision and hearing impairments, thyroid disorders, respiratory diseases, nonischemic cardiac disorders, obesity, osteoporosis, and mental health disorders. 5 They manifest higher rates of frailty and greater severity of frailty scores 30 years earlier than adults in the general population. Hence, 50-year-old adults with IDD tend to have frailty scores comparable to 80-year-old adults in the general population. ...
... In addition, intellectual disability (ID), found in 32% of ASD individuals (9), is commonly associated with a large range of medical comorbidities, such as nutritional deficiencies, cardiovascular diseases (18), polypharmacy (19), and multimorbidity (20), and may contribute to the increased risk of premature ageing of ASD patients (11,21,22). ...
Article
Full-text available
Background: Autism spectrum disorder (ASD) is an early-onset and lifelong neurodevelopmental condition frequently associated with intellectual disability (ID). Although emerging studies suggest that ASD is associated with premature ageing and various medical comorbidities, as described for ID, data are scarce. Objectives: To determine the comorbidity burden and its association with distinct clinical presentation in terms of ASD severity, adaptive skills, level of autonomy, and drug exposure in a well-phenotyped sample of individuals with ASD-ID—the EFAAR (Frailty Assessment in Ageing Adults with Autism Spectrum and Intellectual Disabilities) cohort. Methods: A total of 63 adults with ASD-ID, with a mean age of 42.9 ± 15.1 years, were recruited from 2015 to 2017 from nine specialized institutions. They underwent detailed clinical examinations, including screening for comorbidities, ASD severity [Childhood Autism Rating Scale (CARS)], adaptive functioning [Vineland Adaptive Behavior Scale II (VABS-II)], autonomy [activities of daily living (ADLs)], and drug use [polypharmacy and the Drug Burden Index (DBI)]. The comorbidity burden was evaluated using the Cumulative Illness Rating Scale (CIRS-G) and its sub-scores [the severity index (CIRS-SI) and severe comorbidity (CIRS-SC)]. Results: We found a large range of comorbidities, including gastrointestinal disorders and mental and neurological diseases. Overall, 25% of our ASD-ID sample had chronic kidney disease with the associated increased cardiovascular risk factors. The comorbidity burden was high (mean CIRS-G total score of 10.6 ± 4.8), comparable with that observed among patients older than those in our population hospitalized in geriatric departments. Furthermore, the comorbidity burden positively correlated with age, decreased autonomy, and polypharmacy. Conclusion: The severity of the comorbidity burden associated with premature ageing in adults with ASD and ID highlight their crucial need of personalized medical care.
... Fried's frailty phenotype places a strong emphasis on the physical domain of function and may misclassify some older adults with ID as frail due to its reliance on mobility. 40,41 The cut-offs suggested by Fried et al, 2001 9 are arbitrary, and among a population of older adults with ID these cut-offs may not be valid. ...
Article
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 high rates of hospitalisation for people with ID aged 35-60 years could potentially be linked to their frailty and early onset of the ageing process. Adults with ID show more signs of early frailty than the GP (Schoufour et al. 2013). Results from the 'Dutch Healthy Ageing and Intellectual Disability Study' show that, between ages 50 and 64, frailty is as prevalent as in the GP aged 65 and older, with a further increase after the age of 65 (Evenhuis et al. 2012). ...
Article
Background: Previous studies have found that adults with intellectual disabilities (ID) are hospitalised more often than the general population (GP). This study investigates hospital discharge rates and main diagnostic causes for hospitalisation among administratively defined people with ID compared with the GP in Norway. Method: Data from the Norwegian Labour and Welfare Service was combined with data from the Norwegian Patient Register (Ntotal = 1 764 072 and NID = 7573) for the period 2008-2011. Data from a Norwegian patient report generator and Statistics Norway are also analysed. Results: During the study period, 11% of people with ID and 11.5% of the GP were admitted to hospitals. The length of the average hospital stay was just over 4 days for both groups. Among those who were hospitalised, the majority were only admitted to hospital once during the study period: ID 66% and GP 70%. People with ID were admitted somewhat more often than people in the GP. Contrary to the GP, adults with ID were more frequently hospitalised at a younger age and less frequently at old age. The most common International Classification of Diseases diagnostic group for hospitalisation among people with ID is injury, poisoning and certain other consequences of external causes, whereas for the GP, it is diseases of the circulatory system. Conclusion: This study finds that the proportion of people being hospitalised per year is statistically, but only slightly, different among adult people with ID and the GP. The results must be interpreted in light of the organisation of the health care system in Norway.
... Many systematic reviews have revealed that, compared to the general population, adults with ID exhibit lower levels of cardiovascular fitness [8,9], muscular strength and endurance [8,10,11], and a higher prevalence of obesity [12,13]. Studies also have revealed that adults with ID experience earlier aging [14], loss of independence [15], and a higher prevalence of chronic diseases [16]. Increased levels of physical fitness and PA are critical to the prevention of the onset of these negative health consequences and risk factors [17,18]. ...
Article
Purpose Muscular strength is critical for adults with an intellectual disability (ID) to promote their mobility, cardiovascular capacity, and performance of daily living/recreational/vocational activities. This article reports the results of the first systematic review and meta-analysis of peer-reviewed clinical trials that evaluated the effects of resistance training (RT) interventions on muscular strength in adults with ID. Methods The protocol was registered with PROSPERO (CRD42020184905). The review focuses on clinical trials that recorded quantitative measures of maximum muscular strength. Eleven electronic databases were searched from their earliest available record up to May 2020. After screening 1996 search records, 11 clinical trials were reviewed. Results The RT interventions, while heterogeneous, had an overall significant (p ≤ 0.05) effect on muscular strength in adults with ID, ages 25–58 years. The findings were more significant and less heterogeneous for non-combined RT interventions than for interventions that combined RT exercises with aerobic or balance exercises. The TESTEX overall score was 8.3 ± 3.6. Conclusions RT interventions (particularly when not combined with other exercises) are effective in promoting muscular strength in adults with ID. The limited number of studies and the low study quality scores indicate a potential risk of bias, which limits the interpretation of the findings and warrants further investigation. • IMPLICATIONS FOR REHABILITATION • Muscular strength is critical for adults with an intellectual disability (ID) to promote their mobility, cardiovascular capacity, and performance of daily living/recreational/vocational activities. • RT interventions are an effective means of improving muscular strength in adults with ID, especially when not combined with other forms of exercise. • Testing and assessment protocols used in RT programs should be individualized for adults with ID to accommodate their characteristics and should be implemented under conditions similar to those experienced during the training regimen. • It is important to implement familiarization sessions before carrying out muscular strength testing or initiating an RT program to ensure safety, accuracy, and effectiveness of the program for adults with ID.
... Many other different screening scales of frailty have been developed including the FRAIL scale, The Tilburg Frailty Indicator [17], The Clinical Frailty Scale [18] and The Edmonton Frail Scale [19]. Some have been assessed with specific population groups and applications in mind [20][21][22][23][24][25][26]. For such a complex issue a "one size fits all" solution is neither possible nor appropriate but there is clearly a need to rationalise and unify this area as much as possible to optimise the research and clinical applications of frailty concepts. ...
Article
Full-text available
The global population is increasing rapidly with older persons accounting for the greatest proportion. Associated with this rise is an increased rate of injury, including polytrauma, for which low energy falls has become the main cause. The resultant growing impact on trauma resources represents a major burden to the health system. Frailty, with its related issues of cognitive dysfunction and sarcopenia, is emerging as the unifying concept that relates both to the initial event and subsequent outcomes. Strategies to better assess and manage frailty are key to both preventing injury and improving trauma outcomes in the older population and research that links measures of frailty to trauma outcomes will be critical to informing future directions and health policy. The introduction of “Geriatric Emergency Departments” and the development of “Fracture Units” for frail older people will facilitate increased involvement of Geriatricians in trauma care and aid in the education of other health disciplines in the core principles of geriatric assessment and management. Collectively these should lead to improved care and outcomes for both survivors and those requiring end of life decisions and palliation.
... Specifically, the frailty index (FI) is the ratio of the deficits present in a person to the total number of potential deficits evaluated [3]. The FI has been used in many epidemiological and clinical studies to grade the degree of risk of several adverse outcomes, including mortality, health service use, hospital-acquired complications, worsening health, and loss of independence [4][5][6][7][8][9], as well as conditions such as cognitive impairment [10], heart disease [11], osteoporosis [12], intellectual disability [13], and systemic sclerosis [14]. In most studies, the FIs have been made up of clinically-assessed health deficits [9]. ...
Article
Full-text available
The relationship between age-related frailty and the underlying processes that drive changes in health is currently unclear. Considered individually, most blood biomarkers show only weak relationships with frailty and ageing. Here, we examined whether a biomarker-based frailty index (FI-B) allowed examination of their collective effect in predicting mortality compared with individual biomarkers, a clinical deficits frailty index (FI-CD), and the Fried frailty phenotype. We analyzed baseline data and up to 7-year mortality in the Newcastle 85+ Study (n = 845; mean age 85.5). The FI-B combined 40 biomarkers of cellular ageing, inflammation, haematology, and immunosenescence. The Kaplan-Meier estimator was used to stratify participants into FI-B risk strata. Stability of the risk estimates for the FI-B was assessed using iterative, random subsampling of the 40 FI-B items. Predictive validity was tested using Cox proportional hazards analysis and discriminative ability by the area under receiver operating characteristic (ROC) curves. The mean FI-B was 0.35 (SD, 0.08), higher than the mean FI-CD (0.22; SD, 0.12); no participant had an FI-B score <0.12. Higher values of each FI were associated with higher mortality risk. In a sex-adjusted model, each one percent increase in the FI-B increased the hazard ratio by 5.4 % (HR, 1.05; CI, 1.04-1.06). The FI-B was more powerful for mortality prediction than any individual biomarker and was robust to biomarker substitution. The ROC analysis showed moderate discriminative ability for 7-year mortality (AUC for FI-CD = 0.71 and AUC for FI-B = 0.66). No individual biomarker's AUC exceeded 0.61. The AUC for combined FI-CD/FI-B was 0.75. Many biological processes are implicated in ageing. The systemic effects of these processes can be elucidated using the frailty index approach, which showed here that subclinical deficits increased the risk of death. In the future, blood biomarkers may indicate the nature of the underlying causal deficits leading to age-related frailty, thereby helping to expose targets for early preventative interventions.
Chapter
Children with disability belong not only to the constituency of disabled children but also to that of the general children population. Both constituencies have specific conditions and circumstances, therefore children with disabilities, face double the challenges; challenges faced by the children of the general population, and additional for their dependence (i.e., for their lack of autonomy). Children with disability are first and foremost children, as such; they are entitled to benefit from experiences that are desirable for all children. But, for many children living with a disability, life experiences are not similar to those of other children. They have to cope with the stigma of being “disabled,” as well as with the problems of impairments, emotional anxieties, and social discrimination. This article draws attention to the children with disability in India in the context of United Nations Convention on the Rights of the Child. It also discusses the factors that impede the fulfillment of rights of children with disability. The article builds an argument for the protection of their rights.
Chapter
Increasing life expectancy, shifts to supporting people with intellectual and developmental disabilities in the community, their increased vulnerability to poor health, and the need for greater accountability call for more than occasional studies of aging in this population. Ongoing monitoring of health indicators is feasible in various capacities in different jurisdictions. In this chapter, we first situate the literature about aging with intellectual and developmental disabilities in the context of aging in the general population, and identify key indicators for consideration in health surveillance in older adults with intellectual and developmental disabilities. We then report on a population-based study in Ontario, Canada, which confirms earlier reports of increasing numbers of older adults with intellectual and developmental disabilities, premature aging in this population, and expected trends in use of home care and admission to long-term care. The review concludes with recommendations for future surveillance activities in Ontario and beyond. Concerned researchers should partner with knowledge users/decision-makers to maximize the use of electronic administrative and clinical data available to them. In time, the international research community may identify common indicators and methods thereby generating comparators across systems that can further inform policy development.
Although the population with intellectual disabilities (ID) is increasingly growing older, there seems to be an early onset of functional decline in this group, which could be explained by frailty. We used data from the Healthy Aging and Intellectual Disability study (HA-ID) to measure frailty in people with ID. Frailty was measured with an adapted version of the frailty index, consisting of 50 health and age related deficits. We were the first to measure frailty with a frailty index in this population, and therefore its validity, in terms of predictive value, needed to be established. In the current article we provide an overview of the design of the frailty index and its relation with adverse health outcomes. In a nearly representative study population of 982 50-plus older adults with ID, we studied the prevalence of frailty and its validity over a 3-year follow-up period. Results show that people with ID were earlier and more severely frail than people from the general population. Frailty was related to early mortality, to disabilities in daily functioning and mobility, to increased medication use, and increased care intensity, but not to hospitalization. Using a hypothetical model, we identify possible interventions to increase the healthy life years in people with ID.
Article
Background: As the population ages it is important to identify frailty, a powerful predictor of morbidity and mortality, and often an important unmeasured confounder. We sought to develop a frailty index in the Physician's Health Study (PHS) and estimate the association with mortality. Methods: Prospective cohort study. Annual questionnaire assessed mood, function and health status. Two frailty scores were compared - cumulative deficit frailty index (PHS FI) and modified Study of Osteoporotic Fracture (mSOF) frailty score. Endpoints committee confirmed mortality. Results: 12,180 male physicians ≥60 years were analyzed. Mean(SD) follow-up was 10(3) years, 2168 deaths occurred. PHS FI identified 4412 (36%) physicians robust, 5305 (44%) pre-frail, and 2463 (20%) frail, while mSOF identified 7323 (61%) robust, 3505 (29%) pre-frail and 1215 (10%) frail. Age-standardized rate of death was lower among subjects identified as robust using the PHS FI, 11/1000 person-years (PY) (95% Confidence Interval (CI): 9.5-11.9) compared to 14/1000PY (95% CI: 13.5-15.4) using mSOF [P-difference <0.001]. In the prefrail group, death rates were 16/1000PY in PHS FI and 21/1000PY in mSOF, [P-difference <0.001]. There was no difference in age-adjusted mortality rates in the frail group according to each definition (35 vs 33/1000PY). Survival analysis showed an increased risk of mortality in each frailty category using either definition, (log-rank p<0.001). Conclusion: The PHS FI outperformed mSOF in identifying risk of death particularly in robust and pre-frail categories. Similar indices can be created in existing datasets to identify frail individuals and where appropriate account for frailty, an often unmeasured confounder.
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In general, disabilities are considered a consequence of frailty rather than a cause of frailty, whereas in people with intellectual disabilities (ID), disabilities are often lifelong, which could have consequences for the feasibility and validity of frailty instruments. To better understand frailty in people with ID, we compared two broadly used concepts: the frailty phenotype (FP) and the frailty index (FI) taking into account their feasibility (e.g., percentage of participants able to complete the frailty assessments), agreement, validity (based on 5-year mortality risk), influence of motor disability, and the relation between single frailty variables and mortality. The FI and an adapted version of the FP were applied to a representative dataset of 1050 people with ID, aged 50 years and over. The FI was feasible in a larger part of the dataset (94 %) than the adapted FP: 29 % for all five items, and 81 % for at least three items. There was a slight agreement between the approaches (κ = 0.3). However defined, frailty was related with mortality, but the FI showed higher discriminative ability and a stronger relation with mortality, especially when adjusted for motor disabilities. Concluding, these results imply that the used FI is a stronger predictor for mortality and has higher feasibility than our adaptation of the FP, in older people with ID. Possible explanations of our findings are that we did not use the exact FP variables or that the FI includes multiple health domains, and the variables of the FI have lower sensitivity to lifelong disabilities and are less determined by mobility.
Article
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.
Article
Recent work in Ontario (Canada) revealed that adults with intellectual and developmental disabilities experience higher rates of frailty and use of aging care services at earlier ages than the general population, and that the subset aged 65+ years is increasing. This paper describes the reaction of knowledge users to study findings and implications for policy and practice. A knowledge transfer webinar was held with nearly 200 people representing different regions of the province, participant types (family members, service providers, decision makers, researchers), and sectors (health and developmental services). Most participants viewed health and developmental services systems as not ready for the aging population with intellectual and developmental disabilities for two main reasons: insufficient cross-sector expertise and inadequate funding. The need for healthcare, challenged informal supports, lack of services, and the desire for independence were thought to drive higher use of home care among younger adults, while inadequacies within the developmental services sector, challenged informal supports, medical and care needs, lack of community supports, and the need for coordinated cross-sector services were noted as contributing to admissions to long-term care. There is a lack of evidence-based information on aging and intellectual and developmental disabilities. Ongoing access to quality, population-level data on the number and needs of persons with intellectual and developmental disabilities is needed to improve policies and practices to support aging in the community. Persons working in health and developmental services had a shared understanding of the need for system reform, better collaboration, and integration of resources. Both sectors also viewed admission to long-term care as particularly problematic. The province-wide webinar brought together persons with various levels of responsibility from different sectors. Future exchanges should focus on identifying and promoting best practices.
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Introduction The Healthy Ageing and Intellectual Disability (HA-ID) study is a prospective multicentre cohort study in the Netherlands that started in 2008, including 1050 older adults (aged ≥50) with intellectual disabilities (ID). The study is designed to learn more about the health and health risks of this group as they age. Compared with the amount of research in the general population, epidemiological research into the health of older adults with ID is still in its infancy. Longitudinal data about the health of this vulnerable and relatively unhealthy group are needed so that policy and care can be prioritised and for guiding clinical decision making about screening, prevention and treatment to improve healthy ageing. Methods and analysis This article presents a summary of the previous findings of the HA-ID study and describes the design of the 10-year follow-up in which a wide range of health data will be collected within five research themes: (1) cardiovascular disease; (2) physical activity, fitness and musculoskeletal disorders; (3) psychological problems and psychiatric disorders; (4) nutrition and nutritional state; and (5) frailty. Ethics and dissemination Ethical approval for the 10-year follow-up measurements of the HA-ID study has been obtained from the Medical Ethics Review Committee of the Erasmus MC, University Medical Centre Rotterdam (MEC-2019-0562). Trial registration number This cohort study is registered in the Dutch Trial Register (NTR number NL8564) and has been conducted according to the principles of the Declaration of Helsinki.
Article
Background There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs. Method This study was part of the longitudinal ‘Healthy Ageing and Intellectual Disability’ study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival. Results Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001). Conclusion The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.
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The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing.
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Background: Studies that examined changes in frailty in older populations have been increasing. However, frailty patterns are often portrayed as having single trajectories corresponding to age, and different courses of change in frailty and related factors remain unexplored. Objectives: We aimed to identify distinct frailty trajectories over time and examine the relationship of frailty trajectories with the sociodemographic and lifestyle-related factors among older Koreans. Methods: We used data of 3160 community-dwelling Korean adults aged ≥65 years from the Korean Longitudinal Study of Aging (2006-2016). We conducted the analyses using group-based trajectory modeling, analysis of variance or chi-square tests, and multinomial logistic regression. Results: We identified three frailty trajectory groups among older Koreans: no frailty, increasing frailty, and high frailty based on a deficit-related frailty measure. Each frailty trajectory group showed unique sociodemographic and lifestyle characteristics. Compared to individuals in the no frailty group, those in the increasing frailty group were more likely to be older, less educated, unemployed, current smokers, and current drinkers. Compared to those in the no frailty group, individuals in the high frailty group were more likely to be older, unemployed, current drinkers, and without regular exercise. Conclusions: Using longitudinal data over a 10-year period, we identified multiple frailty trajectories in a cohort of older Koreans, which highlights a significant heterogeneity in frailty development. Our findings suggest the importance of socioeconomic status in determining different patterns of frailty change and the role of lifestyle factors in delaying frailty.
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Background: People with an intellectual disability are more likely to experience frailty earlier in life and with greater severity compared to the general population. There is growing consideration of determinants of frailty and identifying factors which may influence the change in frailty status over time. The objective of this review was to investigate factors associated with the progression of frailty over time among adults with an intellectual disability. Methods: A systematic review of literature was conducted using PRISMA guidelines to identify studies reporting factors associated with transitions and trajectories in deficit accumulation frailty among adults with an intellectual disability. The following eligibility criteria was used: defined frailty as deficit accumulation; longitudinal design; reported at least one individual characteristic associated with change in frailty status; sample was people with an intellectual disability aged ≥18 years; English language. No limitation on publication date was applied. Studies which did not measure frailty according to deficit accumulation, did not report the frailty measure used, or had a cross-sectional design were excluded. Selected studies were assessed for quality using the Critical Appraisal Skills Programme (CASP) framework. Results: In total, two studies qualified for inclusion in this review. Findings revealed that frailty defined as deficit accumulation is a dynamic process and improvements are possible. Changes in the direction of frailty states over time among adults with an intellectual disability may be influenced by several factors including baseline frailty status, age, the presence of Down syndrome, functional ability, cognitive ability, living in a group home, and the use of nursing services and therapies. Conclusions: There is a relative paucity of research on frailty among adults with an intellectual disability and the evidence base must be grown. Exploration of the social domain of frailty in this group should be a priority of future research.
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Older adults with intellectual and developmental disabilities (IDD) are at high risk of adverse events relating to inappropriate or poorly managed psychotropic medication use. Nevertheless, when used judiciously as part of a multimodal approach to treatment, psychotropic medications can offer substantial therapeutic benefit for some elders with IDD. This chapter describes the complexities of psychotropic medication use in older people with IDD and outlines how basic principles for prescribing can inform good practice in the face of these complexities. It draws clinicians’ attention to the growing calls to redress the overuse of antipsychotics for challenging behaviours in adults with IDD. Finally, the chapter touches on issues surrounding complementary and alternative medicines with psychotropic properties, and the recent increase in the use of cannabinoids as therapeutic agents.
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There has been a steady growth in the population of adults with intellectual and developmental disabilities, some of whom are known to age prematurely; aging is also associated with increased rates of disability and chronic conditions that can lead to frailty. Supports provided by social and health sectors are crucial to supporting those identified as frail. A case study design was used to investigate the implementation of inter-sectoral collaboration between providers of services from specific social and health sectors; namely, developmental services (aka disability services) and home care services, in the context of supporting those identified as frail. Twenty-three participants (including individuals with intellectual and developmental disabilities, family members, and providers from both sectors) were interviewed using an open-ended format targeting known conditions for effective inter-sectoral collaboration: necessity, opportunity, capacity, relationships, planned action, and sustained outcomes. Interviews were recorded, transcribed verbatim, and coded by two independent researchers. All participants touched on key facilitators and barriers for successful inter-sectoral collaboration across the six conditions. A single exception occurred in that individuals and families did not discuss sustained outcomes. Each of the six conditions for effective inter-sectoral collaboration is relevant to planning required to support adults with intellectual and developmental disabilities who are frail. When it comes to collaborative ventures between social and healthcare teams, the use of resources and tools that both facilitate and promote these conditions should be prioritised.
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Aim: Frailty is understood as a dynamic non-linear process, and used to indicate age-related decline. Recent work has shown that adults with intellectual and developmental disabilities experience higher rates of frailty at much earlier ages than the general population. The present study describes transitions in frailty status (i.e. non-frail, pre-frail, frail) over 1 year, and explores the association between baseline frailty status and worsening/death over time. Methods: Results are based on secondary analysis of 2893 individuals with intellectual and developmental disabilities receiving community-based home care services in Ontario (Canada). Frailty status is based on a validated 42-item frailty index (FI); where FI ≤0.21 indicates non-frail, 0.21 < FI ≤ 0.3 indicates pre-frail and FI >0.30 indicates frail. Baseline characteristics of frailty groups at baseline were compared using the χ2 -test/analysis of variance. Relative risk of worsening/dying was calculated using a modified Poisson regression model. Results: Initially, 67.0% of participants were non-frail, 16.2% were pre-frail and 16.8% were frail. Of those non-frail at baseline, 84.3% remained non-frail, 11.8% worsened and 3.9% died. Among those initially pre-frail, 37.0% remained stable, 35.3% improved, 18.2% worsened and 9.6% died. Although similar proportions of frail individuals improved (37.4%) or remained stable (36.8%), 25.9% had died. After controlling for other factors, being pre-frail at baseline was associated with an increase in the risk of worsening or death (RR 1.24, 95% CI 1.04-1.49). Conclusions: While many experience worsening of frailty status, stability and improvement are viable goals of care. Future research should examine the rate at which non-frail, pre-frail and frail individuals accumulate deficits, as well as the impact of home care services on frailty. Geriatr Gerontol Int 2017; ••: ••-••.
Article
PURPOSE Age-associated cumulative decline across physiologic systems results in a diminished resistance to stressors, including cancer and its treatment, creating a vulnerable state known as frailty. Frailty is associated with increased risk of adverse outcomes in patients with cancer. Identification of frailty in administrative data can allow for assessment of prognosis and facilitate control for confounding variables. The purpose of this study was to assess frailty from claims-based data using the accumulation of deficits approach in veterans with multiple myeloma (MM). METHODS From the Veterans Administration Central Cancer Registry, we identified patients who were diagnosed with MM between 1999 and 2014. Using the accumulation of deficits approach, we calculated a Frailty Index (FI) using 31 health-associated deficits and categorized scores into five groups: nonfrail (FI, 0 to 0.1), prefrail (FI, 0.11 to 0.20), mild frailty (FI, 0.21 to 0.30), moderate frailty (FI, 0.31 to 0.40), and severe frailty (FI, > 0.4). We used Cox proportional hazards regression analysis to assess association between FI score and mortality while adjusting for potential confounders. RESULTS We calculated an FI for 3,807 veterans age 65 years or older. Among the cohort, 28.7% were classified as nonfrail, 41.3% prefrail, 21.6% mildly frail, 6.6% moderately frail, and 1.7% severely frail. Frailty was strongly associated with mortality independent of age, race, MM treatment, body mass index, or statin use. Higher FI score was associated with higher mortality with hazard ratios of 1.33 (95% CI, 1.21 to 1.47), 1.97 (95% CI, 1.70 to 2.20), 2.86 (95% CI, 2.45 to 3.34), and 3.22 (95% CI, 2.46 to 4.22) for prefrail, mildly frail, moderately frail, and severely frail, respectively. CONCLUSION Frailty status is a significant predictor of mortality in older veterans with MM. Assessment of frailty status using the readily available electronic medical records data in administrative data allows for assessment of prognosis.
Article
Background and objectives: The relationship between frailty and disability in activities of daily living (ADLs) can be seen in different ways, with disability being-to varying degrees-a characteristic, negative outcome, or predictor of frailty. This conflation of definitions is partly a result of the different frailty tools used in research. Aiming to provide a comprehensive overview, this systematic literature search analyzed (i) if, (ii) to what extent, and (iii) how ADLs are evaluated by frailty instruments. Research design and methods: A search was performed in PubMed, Web of Knowledge, and PsycINFO to identify all frailty instruments, followed by categorization of the ADL items into basic (b-), instrumental (i-), and advanced (a-) ADLs. Results: In total, 192 articles described 217 frailty instruments, from which 52.1% contained ADL items: 45.2% b-ADLs, 35.0% i-ADLs, and 10.1% a-ADLs. The most commonly included ADL items were bathing (b-ADLs); using transportation (i-ADLs); and semiprofessional work engagement in organized social life or leisure activities (a-ADLs). These instruments all had a multidomain origin (χ 2 = 122.4, p < .001). Discussion and implications: Because 52.1% of all instruments included ADL items, the concepts of frailty and disability appear to be highly entangled. This might lead to circular reasoning, serious concerns regarding contamination, and invalid research results.
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Background The very low physical fitness levels of people with intellectual disabilities (ID) may influence their life expectancy. Therefore, we investigated the predictive value of physical fitness for survival in older adults with intellectual disabilities. Method In the Healthy Ageing and Intellectual Disabilities (HA‐ID) study,the physical fitness levels of 900 older adults (≥50 years; 61.5 ± 8.1 years) were measured at baseline. All‐cause mortality was collected over a 5‐year follow‐up period. Cox proportional hazard models were used to determine the association between each physical fitness test and survival, adjusted for age, sex, level of ID, and Down syndrome. Results The physical fitness components that were independently predictive for survival were manual dexterity (HR = 0.96 [0.94–0.98]), visual reaction time (HR = 1.57 [1.28–1.94]), balance (HR = 0.97 [0.95–0.99]), comfortable gait speed (HR = 0.65 [0.54–0.78]), fast gait speed (HR = 0.81 [0.72–0.91]), grip strength (HR = 0.97 [0.94–0.99]) and cardiorespiratory fitness (HR = 0.997 [0.995–0.999]), with a better physical fitness showing a lower mortality risk. Conclusion We showed for the first time that physical fitness was independently associated with survival in older adults with intellectual disabilities. Improving and maintaining physical fitness must become an essential part of care and support for this population.
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Epidemiology is the study of prevalence, incidence, and contributors to chronic conditions and other disorders in a population. Data drawn from epidemiological studies increasingly informs the setting of priorities for public health initiatives and healthcare planning, targeting and implementation. Examples of such datasets are national census data, household surveys, birth and death records, surveillance surveys, health indicator surveys, administrative datasets with health encounter, service utilization, and demographic data, registries, electronic health records, and population surveys targeting persons with specific health conditions or disabilities. Challenges exist to utilizing existing datasets to track aging people with intellectual disability due to differences in definitions and how data are gathered. To improve the availability and comparability of epidemiological studies, there needs to be greater standardization in the definition of intellectual disability, in the designation of levels of disability, agreement on age categories, and the use of standardized identifiers for intellectual disability in national datasets.
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Children with disabilities are at a point where child rights and disability rights intersect. Inevitably, the very children who need these rights the most are unable, through personal and/or social circumstances, to use them. Human rights perspective in disability means viewing children with disability as subjects and not objects. It entails a shift from viewing this group of children as problems toward viewing them as holders of rights. This chapter is an attempt to look at and understand the rights of children with disabilities as laid out by the Indian Constitution as well as by the United Convention on Rights of the Child. There is also emphasis on the nature of the disabling experiences, the trend of societal attitudes, stigmatization, and risk of abuse toward these children, policies that have been laid out for them, and their prognosis during COVID-19. Recommendations have been made as to how best we can protect the rights of children with disabilities.
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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.
Article
Purpose: To identify factors associated with the rate of deficit accumulation in a population of adults with intellectual and developmental disabilities (IDD). Methods: A longitudinal analysis of administratively held clinical data collected at routine home care assessments across Ontario (Canada) using the Resident Assessment Instrument for Home Care (RAI-HC) was conducted using a cohort comprised of 5074 adults with IDD 18-99 years of age who had at least two home care assessments between April 1, 2003 and March 31, 2015. Rates of deficit accumulation were calculated across variables of interest. Incidence rate ratios and 95% confidence intervals are presented. Negative binomial regression models using a generalized estimating equation (GEE) approach were developed. Results: Increasing age, Down syndrome, and living in a group home were significant predictors of deficit accumulation. Rates of deficit accumulation tended to be higher among prefrail and frail individuals; however, impaired cognition and impairment in activities of daily living were associated with slower deficit accumulation. The relationship between provision of nursing and therapy services and deficit accumulation is unclear. Conclusions: Frailty should be monitored among adults with IDD starting at age 40 years, those with Down syndrome, and those who live in group homes.
Article
To analyze the relationship between frailty and survival in older people with intellectual disabilities (IDs). Population-based longitudinal observational study. Three Dutch care provider services. Individuals with borderline to profound ID aged 50 and older (N = 982). A frailty index (FI) including 51 health-related deficits was used to measure frailty. Mean follow-up was 3.3 years. The Cox proportional hazards model was used to evaluate the independent effect of frailty on survival. The discriminative ability of the FI was measured using a receiver operating characteristic (ROC) curve. Greater FI values were associated with greater risk of death, independent of sex, age, level of ID, and Down syndrome. There was a nonlinear increase in risk with increasing FI value. For example, mortality risk was 2.17 times as great (95% confidence interval (CI) = 0.95-4.95) for vulnerable individuals (FI 0.20-0.29) and 19.5 (95% CI = 9.13-41.8) times as great for moderately frail individuals (FI 0.40-0.49) as for relatively fit individuals (FI <0.20). The area under the ROC curve for 3-year survival was 0.78. Although the predictive validity of the FI should be further determined, it was strongly associated with 3-year mortality. Care providers working with people with ID should be able to recognize frail clients and act in an early stage to stop or prevent further decline. © 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.
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In clinical practice and epidemiological surveys, anthropometric measurements represent an important component of nutritional assessment in the elderly. The anthropometric standards derived from adult populations may not be appropriate for the elderly because of body composition changes occurring during ageing. Specific anthropometric reference data for the elderly are necessary. In the present study we investigated anthropometric characteristics and their relationship to gender and age in a cross-sectional sample of 3356 subjects, randomly selected from an elderly Italian population. In both sexes, weight and height significantly decreased with age while knee height did not. The BMI was significantly higher in women than in men (27·6 SD 5·7 V. 26·4 sd 3·7; P<0·001) and it was lower in the oldest than in the youngest subjects (P<0·05) of both genders. The 75th year of age was a turning point for BMI as for other anthropometric measurements. According to BMI values, the prevalence of malnutrition was lower than 5 % in both genders, whereas obesity was shown to have a higher prevalence in women than in men (28 % v. 16 %; P<0·001). Waist circumference and waist : hip ratio values were higher for the youngest men than for the oldest men (P<0·05), whereas in women the waist : hip ratio values were higher in the oldest women, suggesting that visceral redistribution in old age predominantly affects females. In conclusion, in the elderly the oldest subjects showed a thinner body frame than the youngest of both genders, and there was a more marked fat redistribution in women.
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America's aging population has led to an increase in the number of elderly patients necessitating emergency general surgery. Previous studies have demonstrated that increased frailty is a predictor of outcomes in medicine and surgical patients. We hypothesized that use of a modification of the Canadian Study of Health and Aging Frailty Index would be a predictor of morbidity and mortality in patients older than 60 years undergoing emergency general surgery. Data were obtained from the National Surgical Quality Improvement Program Participant Use Files database in compliance with the National Surgical Quality Improvement Program Data Use Agreement. We selected all emergency cases in patients older than 60 years performed by general surgeons from 2005 to 2009. The effect of increasing frailty on multiple outcomes including wound infection, wound occurrence, any infection, any occurrence, and mortality was then evaluated. Total sample size was 35,334 patients. As the modified frailty index increased, associated increases occurred in wound infection, wound occurrence, any infection, any occurrence, and mortality. Logistic regression of multiple variables demonstrated that the frailty index was associated with increased mortality with an odds ratio of 11.70 (p < 0.001). Frailty index is an important predictive variable in emergency general surgery patients older than 60 years. The modified frailty index can be used to evaluate risk of both morbidity and mortality in these patients. Frailty index will be a valuable preoperative risk assessment tool for the acute care surgeon. Level of Evidence: Prognostic study, level II.
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Physical fitness is relevant for wellbeing and health, but knowledge on the feasibility and reliability of instruments to measure physical fitness for older adults with intellectual disability is lacking. Feasibility and test-retest reliability of a physical fitness test battery (Box and Block Test, Response Time Test, walking speed, grip strength, 30-s chair stand, 10-m Incremental Shuttle Walking Test and the Extended Modified Back-Saver Sit-and-Reach Test) were investigated in older adults with ID in a convenience sample of 36 older adults (mean 65.9, range 50-89 years), with differing levels of intellectual disability and mobility. All tests to measure physical fitness in older adults with ID had moderate to excellent feasibility and had sufficient test-retest reliability (ICCs .63-.96). No statistically significant learning effects were found.
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the frailty index (FI) is an approach to the operationalisation of frailty based on accumulation of deficits. It has been less studied in Europeans. to construct sex-specific FIs from a large sample of Europeans and study their associations with age and mortality. longitudinal population-based survey. the Survey of Health, Ageing and Retirement in Europe (SHARE, http://share-dev.mpisoc.mpg.de/). a total of 16,217 females and 13,688 males aged ≥50 from wave 1 (2004-05). Mortality data were collected between 2005 and 2006 (mean follow-up: 2.4 years). regression curve estimations between age and an FI constructed as per the standard procedure. Logistic regressions were used to assess the relative effects of age and the FI towards mortality. in both sexes, there was a significant non-linear association between age and the FI (females: quadratic R(2) = 0.20, P < 0.001; males: quadratic R(2) = 0.14, P < 0.001). Overall, the FI was a much stronger predictor of mortality than age, even after adjusting for the latter (females: age-adjusted OR 100.5, 95% confidence interval (CI): 46.3-218.2, P < 0.001; males: age-adjusted OR 221.1, 95% CI: 106.7-458.4, P < 0.001). the FI had the expected properties in this large sample of Europeans.
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Background: There is no consensus regarding the definition of frailty for clinical uses. Methods: A modified Delphi process was used to attempt to achieve consensus definition. Experts were selected from different fields and organized into five Focus Groups. A questionnaire was developed and sent to experts in the area of frailty. Responses and comments were analyzed using a pre-established strategy. Statements with an agreement more than or equal to 80% were accepted. Results: Overall, 44% of the statements regarding the concept of frailty and 18% of the statements regarding diagnostic criteria were accepted. There was consensus on the value of screening for frailty and about the identification of six domains of frailty for inclusion in a clinical definition, but no agreement was reached concerning a specific set of clinical/laboratory biomarkers useful for diagnosis. Conclusions: There is agreement on the usefulness of defining frailty in clinical settings as well as on its main dimensions. However, additional research is needed before an operative definition of frailty can be established.
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 To assess the predictive validity of frailty and its domains (physical, psychological, and social), as measured by the Tilburg Frailty Indicator (TFI), for the adverse outcomes disability, health care utilization, and quality of life.   The predictive validity of the TFI was tested in a representative sample of 484 community-dwelling persons aged 75 years and older in 2008 (response rate 42%). A subset of all respondents participated 1 year later (N = 336, 69%) and again 2 years later (N = 266, 55%). We used the TFI, the Groningen Activity Restriction Scale assessing disability, seven indicators of health care utilization, and a brief version of the World Health Organization Quality of Life questionnaire (WHOQOL-BREF). The WHOQOL-BREF was assessed in 2008 and 2010; all others were assessed in 2008, 2009, and 2010.   The predictive validity of the TFI assessed in 2008 for disability, health care utilization, and quality of life was corroborated by (a) medium to very large associations of frailty with adverse outcomes 1 or 2 years later; (b) mostly good to excellent area under the curve of total frailty; and (c) an increase in predictive accuracy of most adverse outcomes, even after controlling for that same adverse outcome in 2008, and life-course determinants and multimorbidity. Physical frailty was mostly responsible for the predictive validity of the TFI.   This study showed that the TFI is a valid instrument to predict disability, many indicators of health care utilization, and quality of life of older people, 1 and 2 years later.
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To investigate whether dementia risk can be estimated using only health deficits not known to predict dementia. A frailty index consisting of 19 deficits not known to predict dementia (the nontraditional risk factors index [FI-NTRF]) was constructed for 7,239 cognitively healthy, community-dwelling older adults in the Canadian Study of Health and Aging. From baseline, their 5-year and 10-year risks for Alzheimer disease (AD), dementia of all types, and survival were estimated. The FI-NTRF was closely correlated with age (r2 > 0.96, p < 0.001). The incidence of AD and dementia increased exponentially with the FI-NTRF (r2 > 0.75, p < 0.001 over 10 years). Adjusted for age, sex, education, and baseline cognition, the odds ratio of dementia increased by 3.2% (p = 0.021) for each deficit (that was not known to predict dementia) accumulated, outperforming the individual cognitive risk factors. The FI-NTRF discriminated people with AD and all-cause dementia from those who were cognitively healthy with an area under the receiver operating characteristic curve of 0.66 ± 0.03. Comprehensive re-evaluation of a well-characterized cohort showed that age-associated decline in health status, in addition to traditional risk factors, is a risk factor for AD and dementia. General health may be an important confounder to consider in dementia risk factor evaluation. If a diverse range of deficits is associated with dementia, then improving general health might reduce dementia risk.
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Background Frailty in the elderly can be regarded as nonspecific vulnerability to adverse health outcomes, caused by multiple factors. The aim was to analyze the relationships between the frailty index, age and mortality in a two year follow up study of Mexican elderly. Methods A frailty index was developed using 34 variables. To obtain the index, the mean of the total score for each individual was obtained. Survival analyses techniques were used to examine the risk ratios for the different levels of the frailty index. Kaplan-Meier estimates were obtained, adjusted for age and gender. Cox proportional hazards models were also built to obtain hazard ratio estimates. Results A total of 4082 participants was analyzed. Participants had an average age of 73 years and 52.5% were women. On average, participants were followed-up for 710 days (standard deviation = 111 days) and 279 of them died. Mortality increased with the frailty index level, especially in those with levels between .21 to .65, reaching approximately 17% and 21%, respectively. Cox proportional hazards models showed that participants with frailty index levels associated to increased mortality (.21 and higher) represent 24.0% of those aged 65-69 years and 47.6% of those 85 and older. Conclusion The frailty index shows the properties found in the other studies, it allows stratifying older Mexican into several groups different by the degree of the risk of mortality, and therefore the frailty index can be used in assessing health of elderly.
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Because cognitive impairment and frailty share common risk factors (eg, high proinflammatory cytokines), we examined whether poor cognition predicts subsequent risk of frailty in initially nonfrail Mexican Americans aged 67 years and older. Frailty was defined as meeting one or more of the following components: (a) unintentional weight loss of >10 pounds, (b) weakness, (c) self-reported exhaustion, and (d) slow walking speed. Sociodemographic factors, Mini-Mental State Examination, medical conditions (stroke, heart attack, diabetes, arthritis, cancer, and hypertension), and depressive symptoms were obtained. Main outcome measure was risk of becoming frail over 10 years. Out of 942 participants who were nonfrail at baseline (1995-1996), 57.8% were women and the mean age was 73.7 years (SD = 5.3). In general estimation equation models testing the relationship between Mini-Mental State Examination (<21 vs. ≥21) and the risk of becoming frail over a 10-year period, there was a significant association (odds ratio = 1.09, 95% confidence interval = 1.00-1.19; p = .0310)] between the cognition-by-time interaction and odds of becoming prefrail or frail over time. This association was independent of age, sex, marital status, education, time, and medical conditions, indicating that nonfrail participants with poor cognition had a 9% odds per year of becoming frail over time compared with those with good cognition. Low Mini-Mental State Examination score was independently associated with increased risk of frailty over a 10-year period in older Mexican Americans. Low Mini-Mental State Examination score may be an early marker for future risk of frailty.
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This study investigates the factors associated with frailty and the association of frailty with mortality in a national sample of adults aged 65-109 in China. Using the 2002 wave of the Chinese Longitudinal Healthy Longevity Survey, we construct a frailty index (FI) based on 39 measures available in the data set. We use ordinal logistic regressions to examine the factors associated with the FI and use Weibull hazard regression to examine the association between frailty and 3-year mortality from 2002 to 2005. Age, sex, ethnicity, urban-rural residence, economic condition, religious involvement, and daily exercise are significantly associated with levels of frailty. Hazard analyses further reveal that the FI is a robust predictor of mortality at advanced ages and that the relationship between frailty and mortality is independent of various covariates. Discussion The measurement and analysis of frailty have broad implications for public health initiatives designed to target individuals with the diminished capacity to effectively compensate for external stressors and to prevent further declines associated with aging and mortality. A key to healthy longevity is the prevention, postponement, and potential recovery from physical and cognitive deficits at advanced ages through enhanced medical interventions and treatments.
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We evaluated the predictive potential for long-term (24-year) survival and longevity (85+ years) of an index of cumulative deficits (DI) and six physiological indices (pulse pressure, diastolic blood pressure, pulse rate, serum cholesterol, blood glucose, and hematocrit) measured in mid- to late life (44-88 years) for participants of the 9th and 14th Framingham Heart Study examinations. For all ages combined, the DI, pulse pressure, and blood glucose are the strongest determinants of both long-term survival and longevity, contributing cumulatively to their explanation. Diastolic blood pressure and hematocrit are less significant determinants of both of these outcomes. The pulse rate is more relevant to survival, whereas serum cholesterol is more relevant to longevity. Only the DI is a significant predictor of longevity and mortality for each 5-year age group ranging from 45 to 85 years. The DI appears to be a more important determinant of long-term risks of death and longevity than are the physiological indices.
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To obtain first insight into prevalence and correlates of frailty in older people with intellectual disability (ID). Population-based cross-sectional study in persons using formal ID services. Three Dutch care provider services. Eight hundred forty-eight individuals with borderline to profound ID aged 50 and older participating in the Healthy Ageing and Intellectual Disability (HA-ID) Study. All participants underwent an extensive health examination. Frailty was diagnosed according to Cardiovascular Health Study criteria. Associations between frailty and participant characteristics were investigated using multivariate logistic regression analysis. Prevalence of frailty was 11% at age 50 to 64 and 18% at age 65 and older. Age, Down syndrome, dementia, motor disability, and severe ID were significantly associated with frailty, but only motor disability had a unique association with frailty. In a regression model with these variables, 25% of the variance of frailty was explained. At age 50 to 64, prevalence of frailty is as high as in the general population aged 65 and older (7-9%), with a further increase after the age of 65. Motor disability only partially explains frailty. Future studies should address health outcomes, causes, and prevention of frailty in this population.