Shared decision making with frail people with intellectual disabilities in the palliative phase: A process evaluation of the use of the In-Dialogue conversation aid in practice.

BACKGROUND: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. METHODS: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. RESULTS: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging. CONCLUSION: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.

Shared decision-making with people with intellectual disabilities in the last phase of life: A scoping review.

BACKGROUND: Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. METHOD: In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. RESULTS: Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. CONCLUSION: Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

The relationship between motor abilities and quality of life in children with severe multiple disabilities.

BACKGROUND: This study aimed to determine the relationship between motor abilities and quality of life in children with severe multiple disabilities. METHODS: In this cross-sectional study, motor abilities of 29 children (mean age 9.8 years; 45% girls) with severe multiple disabilities [IQ < 25; Gross Motor Function Motor Classification System level V] were measured with the MOtor eVAluation in Kids with Intellectual and Complex disabilities (Movakic) questionnaire (completed by the child's physical therapist). Quality of life was measured with the Quality of Life-Profound Multiple Disabilities (QoL-PMD) questionnaire (completed by the child's parents). RESULTS: A significantly moderate to high correlation was found between the total scores on the Movakic and the QoL-PMD (r = 0.40, P = 0.03), indicating that higher scores in motor abilities are associated with a higher level of quality of life. Furthermore, significantly moderate to high correlations were found between the total score on the Movakic and the dimension Physical Well-Being, Development and Activities of the Qol-PMD. In multiple linear regression models, all significant bivariate relationships between the Movakic total scores and QoL-PMD dimensions remained significant after controlling for the Gross Motor Function Motor Classification System level. CONCLUSIONS: In these children with severe multiple disabilities, motor abilities (as measured by Movakic) are moderately related to quality of life (as measured by the QoL-PMD).

A structured physical activity and fitness programme for older adults with intellectual disabilities: results of a cluster-randomised clinical trial.

BACKGROUND: The physical activity level of older adults with intellectual disabilities (ID) is extremely low, and their fitness levels are far beneath accepted norms for older people with normal intelligence and comparable with frail older people. A physical activity programme, including an education programme, was developed for older adults with ID using behaviour change techniques. The programme aimed at improving or maintaining adequate levels of physical activity (primary outcome measure) and motor fitness, cardio respiratory fitness, morphologic and metabolic fitness, activities of daily living, cognitive functioning and depressive symptoms (secondary outcome measures). METHOD: The programme's efficacy was evaluated in a cluster-randomised clinical trial among people aged 43 years and over with mild-moderate levels of ID. Five day-activity centres were randomised to the participation group. In these centres, 81 older adults participated in groups of 8 to 10 in the programme, three times a week during 8 months. The programme was executed by physical activity instructors and staff of day-activity centres. Five other day-activity centres were randomised to the control group; 70 older adults in these centres received care as usual. The generalised linear model with mixed effects was used to test the programme's effectiveness. RESULTS: Significant effects were found on physical activity, muscle strength, systolic and diastolic blood pressure, serum cholesterol level and cognitive functioning, in favour of the programme's participants. No significant improvements were found on balance, serum glucose, weight, waist circumference, walking speed, mobility, depression or instrumental activities of daily living. CONCLUSIONS: The physical activity and fitness programme has established small but significant effects in this sample, but generalising the findings to other settings is difficult due to significant participant dropout. Implementation of evidence-based physical activity programmes among older adults with ID is recommended. Further research is needed to investigate the effectiveness of physical activity on daily life functioning and the development on chronic diseases in the long run.

Physicians' recognition of death in the foreseeable future in patients with intellectual disabilities.

BACKGROUND: Physicians are increasingly confronted with people with intellectual disabilities (ID) who are facing life-threatening diseases. We aimed to explore when and based on which information sources and signals physicians recognised that a patient with ID would die in the foreseeable future. Insights may help in identifying patients in need of palliative care. METHOD: In this study, 81 physicians for people with ID and 16 general practitioners completed a retrospective survey about their last case of a patient with ID with a non-sudden death. RESULTS: More than 20% of all physicians foresaw death not until the last week of life. In 30% of all patients, the physician did not discuss the start of the palliative care phase until the last week. The most reported information sources based on which physicians foresaw death were the physicians themselves and professional caregivers. We found 40 different signals that lead to physicians' foreseeing death. These were not only medical signals but also behavioural and physical signals. CONCLUSIONS: Results indicate that the physicians' ability to foresee death is a result of a process of growing awareness in which multiple signals from different information sources converge. This demands continuous multi-disciplinary communication because people involved have their own unique interactions with the patient and can therefore contribute to a growing and timely awareness of patients' death in the future.

Associations of symptoms of anxiety and depression with diabetes and cardiovascular risk factors in older people with intellectual disability.

BACKGROUND: Depression, anxiety, diabetes and cardiovascular risk factors are frequent health problems among older people with intellectual disability (ID). These conditions may be bidirectionally related. Depression and anxiety may have biological effects causing glucose intolerance, fat accumulation and also lifestyle changes causing metabolic syndrome. But also the effects of diabetes, metabolic syndrome and subsequent cardiovascular disease may affect mood and anxiety. This study investigated the association between depression, anxiety and diabetes and cardiovascular risk factors in older people with ID. METHODS: The healthy ageing in intellectual disability-study (HA-ID study) is a cross-sectional study among people aged 50 years and over with ID, receiving formal ID care. Screening instruments for symptoms of anxiety and depression were completed and physical examination and vena-puncture were performed to establish components of the metabolic syndrome, peripheral arterial disease and c-reactive protein. RESULTS: Of the 990 people who participated, 17% had symptoms of depression and 16% had symptoms of anxiety. Type I diabetes was present in 1%, type II diabetes in 13% of the study population. Metabolic syndrome, central obesity, hypercholesterolemia and hypertension were present in 45%, 48%, 23% and 53% respectively. In a multivariate logistic regression analysis a significant association was found between increased anxiety symptoms and diabetes only (OR 2.4, 95%CI 1.2-4.9). CONCLUSIONS: Increased anxiety symptoms and diabetes are related in older people with ID. This association may be bidirectional. No other associations of depression and anxiety symptoms with cardiovascular risk factors could be proven to be significant. Therefore, more research is needed to unravel the mechanisms of stress, mood disorders and cardiovascular disease in older people with ID. To provide comprehensive care for older people with ID, screening for diabetes and components of the metabolic syndrome in people with anxiety or mood disorders, and screening for symptoms of anxiety or depression in people with diabetes is warranted.

Exploring the use of actigraphy to investigate sleep problems in older people with intellectual disability.

BACKGROUND: The aim of this study was to explore the use of actigraphy to investigate sleep problems in a convenience sample of clients of Dutch intellectual disability (ID) care providers. Based on data obtained in a large multi-centre study on healthy ageing in people with ID, research questions were: 'To what degree are actigraphic measurements successful in this population?' and 'What is the influence of different sensitivity settings of the Actiwatch Sleep Analysis software on the distribution of sleep variables in this group?' METHODS: Data were collected in a cross-sectional descriptive study design. We included 563 participants, aged 50 years or older, with borderline to profound ID. Sleep-wake data were measured continuously during 14 days and nights using the Actiwatch AW7. A complete measurement of at least 7 days and nights, including at least one weekend day, was considered successful. Objective variables of sleep were analysed using different sensitivity settings of the Actiwatch AW7 Sleep Analysis software. RESULTS: In 200 participants (35.5%), a successful measurement was obtained. Unsuccessful measurements were caused primarily by problems with wearing the device and incomplete information on bed time and get up time. Of 382 participants who started wearing the Actiwatch, 354 (92.3%) wore it for at least 7 days. Application of different sensitivity settings of the Sleep Analysis software resulted in clear differences of all sleep parameters. CONCLUSIONS: Further research is needed into the validity of objective sleep parameters, as measured with the Actiwatch, for screening and epidemiological research in older people with ID. It needs to be investigated which sensitivity setting of the Actiwatch gives most valid results in this specific group, whereas reference data on sleep parameters and cut-off values are to be obtained.

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review.

While effective general practitioner (GP)-patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP-patient communication in palliative care. In a systematic review seven computerized databases were searched to find empirical studies on GP-patient communication in palliative care. Fifteen qualitative studies and seven quantitative questionnaire studies were included. The main perceived barriers were GPs' lack of availability, and patients' and GPs' ambivalence to discuss 'bad prognosis'. Main perceived facilitators were GPs being available, initiating discussion about several end-of-life issues and anticipating various scenarios. Lack of availability and failure to discuss former mistakes appear to be blind spots of GPs. GPs should be more forthcoming to initiate discussions with palliative care patients about prognosis and end-of-life issues. Empirical studies are needed to investigate the effectiveness of the perceived barriers and facilitators.

Measuring self-efficacy and outcome expectancy in evidence-based practice: A systematic review on psychometric properties.

Background: Evidence-based practice has developed over the last 30 years as a tool for the best possible nursing care. Nevertheless, many nurses do not regularly participate in the evidence-based practice process. Barriers to participation include nurses' self-perceived ability in successfully fulfilling evidence-based practice-related tasks (self-efficacy) and their expectations of the positive outcomes of such tasks (outcome expectancy). To evaluate progress and provide feedback to professionals, monitoring the levels of self-efficacy and outcome expectancy with validated instruments is desirable. A comprehensive overview of the psychometric properties of such instruments is lacking. Objectives: To determine the psychometric properties of instruments designed to measure nurses' self-efficacy and outcome expectancy in evidence-based practice. Design and method: This systematic review was performed on studies reporting psychometric properties of instruments that measure self-efficacy and outcome expectancy in EBP. MEDLINE, EMBASE and CINAHL databases were searched up to March 2020. Studies that reported psychometric properties on eligible scales and studied nurses or other healthcare professionals were included. Psychometric properties included content validity, construct validity, reliability, and responsiveness. The COSMIN risk of bias checklist and criteria for good measurement properties were applied independently by two reviewers. This review is registered with PROSPERO (CRD42020183069). Results: Eleven scales measuring self-efficacy or a similar construct and one scale measuring outcome expectancy were identified. The vast majority of the research focused on nurses. Internal consistency and structural validity were the most frequently reported properties, though the recommended confirmative factor analysis to verify the structural validity was rarely performed correctly. In addition, most studies that reported on construct validity did not hypothesise on the expected strength or direction of an effect before the data analysis. Responsiveness was not typically reported or was incorrectly studied. The included articles showed a high quality of evidence for four scales on structural validity and internal consistency. The Self-Efficacy in Evidence-Based Practice Activities scale showed the best content validity and was accompanied by an Outcome Expectations of Evidence-Based Practice scale. Both scales met the COSMIN standards for construct validity with high-quality evidence. Conclusions: In light of the evidence, the Self-Efficacy in Evidence-Based Practice Activities scale is considered promising, and along with the accompanying Outcome Expectations of Evidence-Based Practice scale, appears capable of accurately measuring both self-efficacy and outcome expectancy. The use of these scales is recommended, and further research should be conducted on the responsiveness of the scales.

[Evaluation of units for short-term terminal care in nursing homes]. / Evaluatie van units voor kortdurende terminale zorg bij verpleeghuizen.

The Units for short-term terminal care in 10 nursing homes were evaluated in terms of (a) meeting minimum care requirements for organisation, personnel and expertise and (b) changes in outcomes in patients. Interview with staff members show that 69% of the care requirements were met. Requirements for expertise development were better met (77%), and requirements for personnel and team were met less well (58%). The studies on patient outcomes show that the patients' functional status decreased as death approached, but symptoms did not decrease with similar rates. In addition, quality of life remained stable. We conclude that the minimum care requirements should be revised, taken into account the way the requirements are used in daily practise. The data seem to point at good quality of care. We advise a repetition of the last evaluation in 2003.

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

BACKGROUND: There is a need for a specific tool that supports healthcare professionals in timely identifying people with intellectual disabilities (ID) in need of palliative care. Therefore, we developed PALLI: a tool for screening deteriorating health, indicative of a limited life expectancy. AIMS: We evaluated feasibility, construct validity and predictive validity of PALLI. METHODS: 190 people with ID likely to be in need of palliative care were included. Physicians and daily care professionals (DCPs) completed PALLI and provided information on health outcomes at baseline, after 5-6 months and after 10-12 months. Linear Mixed Models and Generalized Linear Mixed Models were used to test validity. RESULTS: Feasibility was adequate: physicians and DCPs were able to answer most items with 'yes' or 'no' and within a short amount of time. Construct validity was promising: a higher PALLI score at baseline was related to a higher level of decline in health, a higher symptom burden, a lower quality of life and more ADL-dependency at baseline. Predictive validity: only a higher physician-reported PALLI score at baseline significantly increased risk of death within 12 months. CONCLUSIONS: PALLI shows promising feasibility and validity and has potential as a tool for timely identifying people with ID who may benefit from palliative care.

The prevalence of peripheral arterial disease in middle-aged people with intellectual disabilities.

Peripheral arterial disease (PAD) is a manifestation of atherosclerosis below the bifurcation of the abdominal aorta. PAD increases the risk of cardiovascular disease and associated mortality. Little is known about the prevalence of PAD in middle-aged persons with intellectual disabilities (ID). We determined the prevalence of PAD among people with ID aged 40-59 years. Independent associations between PAD and patient and care characteristics were explored. A multi-center cross-sectional observational study was conducted in four care providing agencies for people with ID in the Netherlands. We included 407 participants with mild to profound ID aged 40-59 years, receiving medical care from specialized ID physicians. The ankle-brachial index was used to diagnose PAD. The overall prevalence of PAD was 8.4% (95% CI=6.0-11.4%), with no significant differences between age groups 40-49 years (8.2%) and 50-59 years (8.5%). None of the participants had been diagnosed with PAD prior to this study and only one participant with PAD had PAD-related symptoms (1/34). Wheelchair dependence was independently associated with PAD (OR=5.43). Prevalence of PAD among people with ID is high, which is especially remarkable in age group 40-49 years. Physicians need to be aware of this high prevalence of PAD and the increased risk of cardiovascular disease in (young) people with ID.

Chronic kidney disease in older people with intellectual disability: results of the HA-ID study.

With increasing longevity and cardiovascular events, chronic kidney disease may also become a significant problem in older people with intellectual disability (ID). We studied prevalence and associations of chronic kidney disease as part of the Healthy Ageing and Intellectual Disability (HA-ID) study, a large Dutch cross-sectional study among people with ID aged 50 years and over, using creatinine and cystatin-C measurement in plasma. Glomerular filtration rate (GFR) was calculated using the Modification of Diet in Renal Disease (MDRD) and Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI) equations. Equations based on creatinine (as the MDRD equation) may underestimate kidney dysfunction in people with sarcopenia, because low muscle mass leads to a low creatinine production. Therefore, also prevalence of chronic kidney disease was studied in the sarcopenic group, using different GFR equations. Prevalence of chronic kidney disease, among 635 participants, was 15.3%, which equals prevalence in the general Dutch population. In the group of participants with sarcopenia (n=82), the CKD-EPI equation based on creatinine and cystatin-C gave a higher prevalence of chronic kidney disease than did the MDRD equation, but confidence intervals were very wide. Chronic kidney disease was associated with higher age, Down syndrome, obesity, hypercholesterolemia and hypothyroid disease. GFR should be measured in all older people with ID and polypharmacy, and in older people with ID and Down syndrome as part of the regular health checks. Moreover, if sarcopenia is present and information on GFR is required, this should not be measured based on creatinine only, but additional measures, such as cystatin-C, should be taken into account.

Peripheral arterial disease in older people with intellectual disability in The Netherlands using the ankle-brachial index: results of the HA-ID study.

Older people with an intellectual disability (ID) have been shown to have similar to increased cardiovascular risks as compared to the general population. Peripheral arterial disease (PAD), atherosclerosis distal from the aortic bifurcation, is associated with increased cardiovascular morbidity and mortality. The prevalence of PAD has not been investigated in this population. Therefore, the aim of the present study was to determine the prevalence of PAD in older people with ID in The Netherlands, the rate of prior diagnoses, and correlations with participant characteristics, and to compare the prevalence with PAD in the general Dutch population. 771 people aged 50 years and over participated in ankle-brachial index (ABI) measurement as part of a multi-centre cross-sectional study (HA-ID study). PAD was defined as an ABI<0.9. After excluding those, who met the exclusion criteria, 629 participants remained. PAD was present in 20.7% of the participants and 97% had not been diagnosed before. People with higher age, smokers and people who lived in central settings, walked with support and were more dependent in activities of daily living were more at risk of PAD. Prevalence of PAD is higher than in the general population (17.4% of 562 eligible participants with ID, as compared to 8.1% of 917 Dutch participants of the PANDORA study, a pan-European study into the prevalence of PAD) through all age groups. Because the high prevalence of PAD implies a serious health risk for older people with ID, we recommend that ankle-brachial index measurement is to be routinely performed as part of the cardiovascular risk management in this group.

Prevalence, associated factors and treatment of sleep problems in adults with intellectual disability: a systematic review.

In people with intellectual disability (ID), impaired sleep is common. Life expectancy has increased in this group, and it is known that in general population sleep deteriorates with aging. Therefore the aims of this systematic review were to examine how sleep problems are defined in research among adults and older people with ID, and to collect information on the prevalence, associated factors and treatment of sleep problems in this population. PubMed, EMBase, PsycINFO and Web of Science were searched for studies published between January 1990 and August 2011. All empirical studies covering sleep problems in adults with ID were included, and assessed on quality (level of evidence), using a slightly modified version of the SIGN-50 methodology checklist for cohort studies. Of 50 studies that were included for systematic review, one was of high quality, 14 were well conducted, 14 were well conducted but with a high risk of bias, and 21 were non-analytical. The reported estimated prevalence rates of sleep problems in adults with ID ranged from 8.5% to 34.1%. A prevalence of 9.2% was reported for significant sleep problems. Sleep problems were associated with the following factors: challenging behavior; respiratory disease; visual impairment; psychiatric conditions; and using psychotropic, antiepileptic and/or antidepressant medication. Little information was found on older people specifically. Two studies reported treatment effects on sleep problems in larger populations; their findings suggest that non-pharmaceutical interventions are beneficial. Research on the prevalence, associated factors and treatment of sleep problems in adults and older people with ID has mainly focused on subjectively derived data. The definitions used to describe a sleep problem are not uniform, and associations are mainly described as correlations. In order to give recommendations for clinical practice further research is needed, involving objective measurements and multivariate analysis.

Cardiovascular risk factors (diabetes, hypertension, hypercholesterolemia and metabolic syndrome) in older people with intellectual disability: results of the HA-ID study.

Hypertension, diabetes, hypercholesterolemia and the metabolic syndrome are important risk factors for cardiovascular disease (CVD). In older people with intellectual disability (ID), CVD is a substantial morbidity risk. The aims of the present study, which was part of the Healthy Ageing in Intellectual Disability (HA-ID) study, were (1) to determine the prevalence of CVD risk factors in older people with ID and to compare this with the prevalence in the same-aged general population, (2) to determine how many risk factors had not been previously diagnosed, and (3) to identify correlates of CVD risk factors (gender, age, level of ID, Down syndrome, independent living, activities of daily living, mobility, instrumental activities of daily living, physical activity, use of atypical antipsychotics, central obesity), using logistic regression analyses. In this cross-sectional study, 980 people with borderline to profound ID participated. Hypertension (53%), diabetes (14%) and metabolic syndrome (45%) were present similarly as in the general Dutch population. Hypercholesterolemia was present less often (23%). Fifty percent of the people with hypertension had not been previously diagnosed with this condition. Percentages for diabetes, hypercholesterolemia, and the metabolic syndrome were 45, 46 and 94 respectively. People who were more at risk for CVD risk factors were women, older people, people with obesity, people who lived more independently and people who were able to do groceries or prepare a meal independently. Policy on prevention, detection and treatment of CVD risk factors is urgently needed.

Overweight and obesity in older people with intellectual disability.

Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight, obesity and body fat percentage in older people with intellectual disability (ID) through measurement of Body Mass Index (BMI), waist circumference, waist-to-hip ratio (WHR) and skin fold thickness, and compare this with prevalence of overweight and obesity in the general population, and (2) the association of overweight and obesity with participant and treatment characteristics (gender, age, level of ID, Down syndrome, autism, independent living, smoking, (instrumental) activities of daily living ((I)ADL), physical activity and use of atypical antipsychotic medication) using regression analyses. In this cross-sectional study 945 persons, aged 50 and over with borderline to profound ID, living in central settings, in community settings and independently were included. Overweight and obesity were highly prevalent, with more obesity (26%) than in the general Dutch older population (10%) as measured by BMI, and 46-48% obesity as measured by waist circumference and WHR respectively. Women, people with Down syndrome, higher age, less severe ID, autism, people who are able to eat independently, preparing meals and doing groceries independently, people with physical inactivity and use of atypical antipsychotics were significantly more at risk of being overweight or obese. This merits specific actions by policy makers and clinical practice to improve health outcomes.

How goal disturbance, coping and chest pain relate to quality of life: A study among patients waiting for PTCA.

This article describes psychological correlates of quality of life (QOL) in patients on a waiting list for percutaneous transluminal coronary angioplasty (PTCA). Variables were selected based on a theoretical model describing psychological correlates of QOL in PTCA patients. This model was based on self-regulation and stress-coping theories. The variables in the model are stress appraisal, coping, coping resources, and general and disease-specific QOL variables. Respondents were 122 patients on a 3-month waiting list for a PTCA. Results indicated that PTCA patients had a poorer QOL than matched healthy controls. Using a path analysis approach to regression analysis, it appeared that goal disturbance, avoidant coping, approach coping, and chest pain were related to QOL. More specifically, chest pain and goal disturbance were only related to health-related QOL and negative affect. Both approach and avoidant coping were related to QOL variables. Results could be explained adequately using self-regulation theory. Recommendations for future research and for form and content of rehabilitation programmes were made.