Prevalence of swallowing difficulties and associated factors in older people with intellectual disabilities.

BACKGROUND: We investigated the prevalence of swallowing difficulties and associated factors in people with intellectual disability. METHODS: We included people aged 50+ receiving care for people with intellectual disabilities. The Dysphagia Disorder Survey (DDS) was used to assess swallowing difficulties. We determined the agreement between the DDS and swallowing difficulties in medical records. We used logistic regression analyses to explore associated factors. RESULTS: One thousand and fifty people were included. The prevalence of swallowing difficulties was 43.8%. Swallowing difficulties were not reported in the medical records of 83.3% of these cases. Frailty (odds ratio (OR) = 4.22, 95% CI = 2.05-8.71), mobility impairment (OR = 2.50, 95% CI = 1.01-6.19), and mealtime dependency (OR = 3.05, 95% CI = 1.10-8.47) were independently associated with swallowing difficulties. CONCLUSION: Swallowing difficulties are prevalent in older people with intellectual disability but may be under-recognised. Frailty may be a good indicator for population-based screening for swallowing difficulties.

Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: A descriptive ethnographic study.

BACKGROUND: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. METHODS: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54-89 years, with mild to moderate intellectual disabilities (IQ <70) and low social-emotional development levels. We combined participant observations and qualitative interviews. RESULTS: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. CONCLUSION: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited.

Nurse Leadership and Work Environment Association with Outcome Expectancy and Self-Efficacy in Evidence-Based Practice among Hospital Nurses in The Netherlands: A Cross-Sectional Study.

The active participation of nurses in evidence-based practice (EBP) is challenging and topical, as shown by the worldwide calls for appropriate, accessible, affordable care and the de-implementation of unnecessary care. Nurses' perceived support from their managers and work environments may affect their self-efficacy and outcome expectancy in EBP, as well as hinder them in EBP. Associations between these issues have not yet been explored. This study examines the association of self-efficacy and outcome expectancy levels in EBP, as well as the perceived support for EBP from nurse leaders and in the working environment, among Dutch hospital nurses. METHODS: Questionnaires measuring nurses' self-efficacy, outcome expectancy, and perceived support for EBP from nurse leaders and their work environment were completed by 306 nurses in eight hospitals between March 2021 and June 2021. We used multilevel regression analyses to determine the associations and covariates. RESULTS: This study shows that EBP-supportive leaders and work environments positively contribute to nurses' self-efficacy and outcome expectancy in EBP, along with the covariates undertaking EBP activities and educational level. CONCLUSIONS: To improve nurses' active participation in EBP, nurses need to increase their self-efficacy and outcome expectancy in EBP. Supportive leaders and a supportive work environment do have an impact. Hence, these factors need attention when implementing EBP among nurses.

Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.

BACKGROUND: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. METHODS: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid. RESULTS: In Round 1, components were rated as (very) relevant by 70-98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67-97% (M = 90%) and feasibility ratings 66-86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision. CONCLUSION: The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.

Validation of the Dutch version of the Edmonton Symptom Assessment System.

BACKGROUND: The Utrecht Symptom Diary (USD) is a Dutch and adapted version of the Edmonton Symptom Assessment System, a patient-reported outcome measurement (PROM) tool to asses and monitor symptoms in cancer patients. This study analyses the validity and responsiveness of the USD and the cutoff points to determine the clinical significance of a symptom score. METHODS: Observational longitudinal cohort study including adult in- and outpatients treated in an academic hospital in the Netherlands who completed at least one USD as part of routine care (2012-2019). The distress thermometer and problem checklist (DT&PC) was used as a reference PROM. Content, construct and criterion validity, responsiveness, and cutoff points are shown with prevalences, area under receiver operating characteristic (ROC) curve, Chi-squared test, Wilcoxon signed-rank test, and positive and negative predictive values, respectively. RESULTS: A total of 3913 patients completed 22 400 USDs. Content validity was confirmed for all added USD items with prevalences of ≥22%. All USD items also present on the DT&PC demonstrated a good criterion validity (ROC >0.8). Construct validity was confirmed for the USD as a whole and for the items dry mouth, dysphagia and well-being (P < .0001). USD scores differed significantly for patients when improving or deteriorating on the DT&PC which confirmed responsiveness. Optimal cutoff points (3 or 4) differed per symptom. CONCLUSION: The USD is a valid 12-item PROM for the most prevalent symptoms in cancer patients, which has content, criterion, and construct validity, and detects clinically important changes over time, in both curative and palliative phase.

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).

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.

Comparing two frailty concepts among older people with intellectual disabilities.

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.

Physician-Reported Symptoms and Interventions in People with Intellectual Disabilities Approaching End of Life.

BACKGROUND: Insights into symptoms and interventions at the end of life are needed for providing adequate palliative care, but are largely lacking for people with intellectual disabilities (IDs). OBJECTIVES: We aimed at determining the prevalence rates of physician-reported symptoms from the Edmonton Symptom Assessment System (ESAS) at the moment that physicians recognized patient's death in the foreseeable future. In addition, we aimed at exploring provided interventions as reported by physicians in the period between physicians' recognition of death in the foreseeable future and patients' death. MEASUREMENTS: In this study, 81 physicians for people with IDs (ID-physicians) completed a retrospective survey about their last patient with IDs with a nonsudden death. RESULTS: On average, patients suffered from three of the eight ESAS symptoms. Fatigue (83%), drowsiness (65%), and decreasing intake (57%) were most reported. ID-physicians reported a median number of four interventions. Interventions were mostly aimed at somatic problems, such as pain and shortness of breath. Burdensome interventions such as surgery or artificial respiration were least or not reported. Palliative sedation was provided in a third of all cases. CONCLUSION: Although ID-physicians reported a variety of their patients' symptoms and of provided interventions at the end of life, using adequate symptom assessment tools suitable for people with IDs and continuous multidisciplinary collaboration in palliative care are essential to capture symptoms as fully as possible.

Construct validity and responsiveness of Movakic: An instrument for the evaluation of motor abilities in children with severe multiple disabilities.

Movakic is a newly developed instrument for measurement of motor abilities in children with severe multiple disabilities, with a satisfactory feasibility and content validity and good inter-observer and test-retest reliability. The objective of this study was to investigate its construct validity and responsiveness to change. Sixty children with severe multiple disabilities (mean age 7.7 years, range 2-16) were measured using Movakic six times during 18 months. Construct validity was assessed by correlating Movakic scores with expert judgment. In order to assess responsiveness, scores during 3-months intervals were compared (mean score-changes and intraclass correlations) during which some children experienced meaningful events influencing motor abilities and during which others experienced no such event. Forty-five percent of children had a lower cognitive development level than 6-month, 52% had Gross Motor Function Classification System level V and 37% had level IV. For 27 children all measurements were completed, six children dropped out. Construct validity was good (r=0.50-0.71). Responsiveness was demonstrated by significantly larger score changes after events than when such events did not occur. Movakic is a valid instrument for measuring motor abilities in children with severe multiple disabilities. Results suggest responsiveness to change in motor abilities after meaningful events.

Biochemical measures and frailty in people with intellectual disabilities.

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.

Instruments for the evaluation of motor abilities for children with severe multiple disabilities: A systematic review of the literature.

Based on a systematic review, psychometric characteristics of currently available instruments on motor abilities of children with disabilities were evaluated, with the aim to identify candidates for use in children with severe multiple (intellectual and motor) disabilities. In addition, motor abilities are essential for independent functioning, but are severely compromised in these children. The methodological quality of all studies was evaluated with the Consensus Based Standards for the Selection of Health Status Measurement Instruments (COSMIN) Checklist; overall levels of evidence per instrument were based on the Cochrane Back Review Group strategy. As a result, 18 studies with a total of eight instruments, developed for children with cerebral palsy (CLA, GMFM-88 and LE85), spinal muscular atrophy (MHFMS), neuromuscular diseases (MFM), disabilities 0-6 years (VAB, WeeFIM), and one developed specifically for children with severe multiple disabilities (TDMMT) were found. Strong levels of evidence were found for construct validity of LE85 and MFM and for responsiveness of WeeFIM, but reliability studies of these instruments had a limited methodological quality. Up to now studies of the TDMMT resulted in limited and unknown evidence for structural validity due to the poor methodological quality of reliability studies. In a next step, the clinical suitability of the instruments for children with severe multiple disabilities will be evaluate.

[Frailty in people with intellectual disabilities: operationalization, risks and detection]. / Kwetsbaarheid bij ouderen met een verstandelijke beperking: operationalisering, risico en opsporing.

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.

Predicting 3-year survival in older people with intellectual disabilities using a Frailty Index.

OBJECTIVES: To analyze the relationship between frailty and survival in older people with intellectual disabilities (IDs). DESIGN: Population-based longitudinal observational study. SETTING: Three Dutch care provider services. PARTICIPANTS: Individuals with borderline to profound ID aged 50 and older (N=982). MEASUREMENTS: 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. RESULTS: 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. CONCLUSION: 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.

The use of a frailty index to predict adverse health outcomes (falls, fractures, hospitalization, medication use, comorbid conditions) in people with intellectual disabilities.

Frailty in older people can be seen as the increased likelihood of future negative health outcomes. Lifelong disabilities in people with intellectual disabilities (ID) may not only influence their frailty status but also the consequences. Here, we report the relation between frailty and adverse health outcomes in older people with ID (50 years and over). In a prospective population based study, frailty was measured at baseline with a frailty index in 982 older adults with ID (≥50 yr). Information on negative health outcomes (falls, fractures, hospitalization, increased medication use, and comorbid conditions) was collected at baseline and after a three-year follow-up period. Odds ratios or regression coefficients for negative health outcomes were estimated with the frailty index, adjusted for gender, age, level of ID, Down syndrome and baseline adverse health condition. The frailty index was related to an increased risk of higher medication use and several comorbid conditions, but not to falls, fractures and hospitalization. Frailty at baseline was related to negative health outcomes three years later in older people with ID, but to a lesser extent than found in the general population.

[Sexuality and contraception in young people with mild intellectual disability; a qualitative study on the basis of 28 interviews]. / Seksualiteit en anticonceptie bij licht verstandelijk beperkte jongeren; een kwalitatief onderzoek op basis van 28 interviews.

OBJECTIVE: To investigate how doctors can improve the advice and education about sexuality and contraception given to young people with mild intellectual disability (IQ :50-70). DESIGN: Semi-structured interviews. METHOD: Young people attending special needs secondary schools (IQ: 50-70) were interviewed. Pupils with a known history of sexual abuse were excluded. RESULTS: A total of 17 of the 57 potential candidates were excluded. Of the remaining 40 pupils, 28 agreed to take part (13 male; age range: 15-18 years, average IQ: 58). Of the 28 participants, 19 had been in a relationship, 5 had experience with sexual intercourse and 11 used contraception. Just as in other studies, the participants seemed to have less knowledge, and less experience than young people of their age without a disability, but did show interest. They were at increased risk because of inappropriate use of contraception and had limited social resilience. Only knowledge about the pill and condoms was fair to good. Interest and knowledge seemed greater in those young people in a relationship. Poor verbal skills hampered their understanding of the questions asked and of the information offered, and limited their ability to express feelings and opinions. Those young people in a relationship wanted to choose their own form of contraception. CONCLUSION: In this group of vulnerable young people, provision of sexual education by the doctor at the right moment using simple language and repetition, can contribute to the timely and safe use of contraceptives.Conflict of interest and financial support: none declared.

The impact of frailty on care intensity in older people with intellectual disabilities.

Frailty appears to develop earlier and is more severe in people with intellectual disabilities compared to the general population. The high prevalence of frailty may lead to an increase in care intensity and associated health care costs. Therefore a longitudinal observational study was conducted to determine the effect of frailty on care intensity. The association between frailty and care intensity at baseline and follow-up (3 years later) was assessed. Furthermore, the ability of the frailty index to predict an increase in care intensity after 3 years was evaluated. This study was part of the Dutch 'Healthy aging and intellectual disabilities' (HA-ID) study. Frailty was measured at baseline with a frailty index that included 51 health-and age-related deficits. For all participants information on care intensity in seven steps was available, based on long term care indications under the Act on Exceptional Medical Expenses (AWBZ)--a law that finances specialized long-term care. 676 participants (50 years and over) with ID were included in the final analysis. In 26% of the participants, care intensity had increased during the follow-up period. Increased care during the follow-up was related to a high frailty index score at baseline, independent of gender, age, level of ID and the presence of Down syndrome (p = 0.003). After exclusion of ADL and IADL items, the frailty index remained significantly related with increasing care intensity during follow-up (p = 0.007). Our results underline that screening instruments for early detection of frailty and effective interventions are required to limit the burden of frailty for individuals and caregivers, but also to limit health care utilization.

Predicting disabilities in daily functioning in older people with intellectual disabilities using a frailty index.

Frailty is a state of increased vulnerability to adverse health outcomes compared to others of the same age. People with intellectual disabilities (ID) are more frequently and earlier frail compared to the general population. Frailty challenges much of health care, which will likely further increase due to the aging of the population. Before effective interventions can start, more information is necessary about the consequences of frailty in this, already disabled, population. Here we report whether frailty predicts disabilities in daily functioning. Frailty was measured with a frailty index (FI). At baseline and follow-up activities of daily living (ADL), instrumental activities of daily living (IADL) and mobility were collected by informant report. For 703 older people with ID (≥50 yr) baseline and follow-up measures were known. Multivariate linear regression models were used to predict ADL, IADL and mobility at follow-up. The FI was significantly associated with disabilities in daily functioning independent of baseline characteristics (age, gender, level of ID, Down syndrome) and baseline ADL, IADL or mobility. The FI showed to be most predictive for those with relative high independence at baseline. These results stress the importance for interventions that limit the progression of frailty and, thereby, help to limit further disability.

Facilitators and barriers to physical activity as perceived by older adults with intellectual disability.

Older people with intellectual disability (ID) are characterized by low physical activity (PA) levels. PA is important for reducing health risks and maintaining adequate fitness levels for performing activities of daily living. The aim of this study was to explore preferences of older adults with ID for specific physical activities, and to gain insight into facilitators and barriers to engaging into PA. Fourteen in-depth interviews and four focus groups were undertaken, with a total of 40 older adults with mild and moderate ID included in the analysis. NVivo software was used for analysing the transcribed verbatim interviews. In total, 30 codes for facilitators and barriers were identified. Themes concerning facilitators to PA were enjoyment, support from others, social contact and friendship, reward, familiarity, and routine of activities. Themes concerning barriers to PA were health and physiological factors, lack of self-confidence, lack of skills, lack of support, transportation problems, costs, and lack of appropriate PA options and materials. The results of the present study suggest that older adults with ID may benefit from specific PA programs, adapted to their individual needs and limitations. Results can be used for developing feasible health promotion programs for older adults with ID.

Bone quality in older adults with intellectual disabilities.

Although osteoporosis is a progressive bone disease leading to increased risk of fracture, it has rarely been investigated on a large scale in older people with intellectual disabilities (ID). In this study, 768 persons with ID (aged ≥ 50 years) were measured with quantitative ultrasound to determine the prevalence of low bone quality. The association of low bone quality with patient characteristics, mobility, physical activity, body mass index (BMI), prior fractures, anticonvulsant drug use, intake of calcium, and vitamin D3 levels was also investigated. The prevalence of low bone quality was 43.9%. Low bone quality was positively associated with female gender, age, more severe level of ID, mobility impairment, and anticonvulsant drug use, and negatively with BMI. In clinical practice, people with ID who are at risk for low bone quality should periodically be screened for osteoporosis and be given advice about nutritional supplements and appropriate lifestyle.

Implementation of a group-based physical activity programme for ageing adults with ID: a process evaluation.

RATIONALE, AIM AND OBJECTIVES: This paper describes the results of the process evaluation of a physical activity programme for people with intellectual disabilities (ID), including information about the concepts 'fidelity', 'dose delivered', 'satisfaction' and 'context'. METHODS: Qualitative and quantitative methods among participants and programme leaders were used. RESULTS: The programme was well accepted, feasible and applicable to ageing people with ID. It was successfully implemented in terms of fidelity and dose delivered, although differences between day-activity centres were observed. CONCLUSIONS: The hampering factors that are revealed in this study and the facilitating activities that were part of the implementation plan may be used by care provider services for (ageing) people with ID and other groups of people with cognitive and/or physical deficits, such as frail elderly people or people with dementia when developing and or preparing implementation of health promotion programmes.