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.

Clinical aspects of a large group of adults with Angelman syndrome.

Descriptions of the clinical features of Angelman syndrome (AS) have mainly been focused on children. Here, we describe the evolution of the clinical phenotypes of AS in adulthood, using clinical data from 95 individuals (mean age 31.6 years, median 29.0 years, range 18-83 years), with genetically confirmed AS. Data was collected through physical examination and inspection of medical records, combined with questionnaires and interviews. Adults with AS experience substantial debilitating health problems. Constipation, reflux, visual problems, scoliosis, behavioral and sleeping problems occurred frequently and require appropriate attention. Epilepsy was reported in 57% of adults, negatively affecting the level of functioning. Non-convulsive status epilepticus was not observed in the adults, however some individuals developed prolonged episodes of rhythmic shaking while awake. A decline in mobility was noted in the majority of adults. A minority of adults with AS showed microcephaly. Taken together, this first phenotypic study of adults with AS to include in person interviews with care-givers and physical examination of patients, including the eldest adult reported to date, provides important insight in the development of the syndrome into adulthood. This knowledge is required to improve care for adult individuals with AS and to evaluate future therapies for this group.

Hair glucocorticoids in adults with intellectual disabilities and depressive symptoms pre- and post-bright light therapy: First explorations.

BACKGROUND: Depressive symptoms and stress are common in adults with intellectual disabilities. Our aim was to explore long-term biological stress levels, assessed by hair cortisol (HairF) and cortisone (HairE) concentrations, in adults with intellectual disabilities and depressive symptoms and to investigate the effects of bright light therapy (BLT) on hair glucocorticoids. METHOD: Scalp hair samples (n = 14) were retrospectively examined at baseline and post-BLT (10.000 and 300 lux). Liquid chromatography-tandem mass spectrometry was used to measure hair glucocorticoids. RESULTS: A significant correlation was found between baseline HairF and depression scores (r = .605, p = .028). Post-intervention HairE levels were significantly increased ([95% CI: 11.2-17.4 pg/mg], p = .003), in particular after dim light (300 lux) ([95% CI: 10.0-18.3 pg/mg], p = .020). CONCLUSIONS: This study showed that retrospectively examining biological levels of stress in adults with intellectual disabilities seems a potentially promising and objective method to gain insight in the stress level of adults with intellectual disabilities.

The effect of bright light therapy on depressive symptoms in adults with intellectual disabilities: Results of a multicentre randomized controlled trial.

BACKGROUND: Although a large number of adults with intellectual disabilities have depressive symptoms, non-pharmacological treatments are scarce. The present authors investigated whether bright light therapy (BLT) is effective in decreasing depressive symptoms compared to care as usual. METHODS: This multicentre randomized controlled trial consisted of three study groups (10,000 lux BLT, dim light BLT and a no-BLT group). Participants received BLT for 30 min in the morning (14 consecutive days), additional to their regular care. Primary outcome was as follows: depressive symptoms measured with the ADAMS Depressive Mood subscale 1 week after the end of BLT (same time period in the no-BLT group). RESULTS: Forty-one participants were included in our trial. In both BLT groups, a significant decrease in depressive symptoms was seen. No significant differences were found between 10,000 lux BLT and no-BLT (p = .199) and no significant differences between dim light BLT and no-BLT (p = .451). A minimum amount of side effects and no adverse events were reported. CONCLUSIONS: In both BLT interventions, a decrease in depressive symptoms was seen. With 10,000 lux BLT, depressive symptoms decreased even below the clinical cut-off point, which makes BLT a promising intervention for clinical practice.

Reliability and validity of the Dutch Anxiety, Depression And Mood Scale in adults aged <50 years with intellectual disabilities.

BACKGROUND: Reliable and valid screening instruments for depression and anxiety are needed for adults with intellectual disabilities. METHODS: Internal consistency (n = 198), inter-rater reliability (n = 41), test-retest reliability (n = 37) and criterion validity (n = 43) were studied in adults aged between 18 and 49 years. Internal consistency was also studied in a sample with epilepsy (n = 98). RESULTS: Internal consistencies of the Dutch ADAMS total scale and subscales were satisfactory to good (α = 0.76-0.92), as well as in the subgroup with epilepsy (α = 0.74-0.88). Inter-rater reliability and test-retest reliability were fair to excellent for the total scale (ICC's: 0.57-0.84) and subscales (ICC's: 0.43-0.86). The criterion validity of the Dutch ADAMS Depressive Mood subscale was good with a sensitivity of 88% (95% CI: 53%-98%) and a specificity of 80% (95% CI: 64%-90%). CONCLUSIONS: Our study shows that the Dutch ADAMS is a reliable and valid instrument for adults aged between 18 and 49 years with intellectual disabilities (and comorbid epilepsy).

Letter to the editor concerning the article "Relationship between school rhythm and physical activity in adolescents: the HELENA study" by Vanhelst et al. (2017).

Recently Vanhelst et al. published a study on the relationship between school rhythm and physical activity patterns in European adolescents in the Journal of Sports Sciences. With this Letter to the Editor we would like to comment on the practical implementation and further perspectives of the study.

[Older adults with intellectual disabilities markedly decline in daily functioning over a 3­year period: Results of the HA-ID study]. / Ouderen met een verstandelijke beperking verliezen veel zelfredzaamheid gedurende drie jaar: resultaten van de Gezond Ouder studie (GOUD).

The responsibilities for the care of a significant portion of the population with an intellectual disability (ID) were recently transferred from the government to the municipalities. It is therefore important that policymakers and care professionals know how much support this population needs in their daily life. Therefore, this study focuses on the decline in daily functioning of older adults with ID (≥50 years, n = 703) over 3 years, and if daily functioning is a predictor for all-cause mortality. Daily functioning was operationalized as basic and instrumental activities of daily living (ADL and IADL) and mobility. Fifty-five percent of the total group declined in ADL, 42 % in IADL, and 38 % in mobility. Thirty-nine percent of the participants with mild ID declined in ADL, 55 % in IADL, and 27 % in mobility. Poor daily functioning and mobility was a risk factor for all-cause mortality. This epidemiological study shows a clear decline in the daily functioning of older adults with intellectual disabilities over a 3-year follow-up period. Care providers should be aware of this decline and focus on maintaining as much independence as possible.

Behavior in children with Prader-Willi syndrome before and during growth hormone treatment: a randomized controlled trial and 8-year longitudinal study.

Information on behavior of children with Prader-Willi syndrome (PWS) and the effect of growth hormone (GH) treatment is scarce. Parents report less problem behavior during GH treatment. Forty-two pre-pubertal children, aged 3.5-14 years were studied in a randomized controlled GH trial (RCT) during 2 years, followed by a longitudinal study during 8 years of GH treatment. Behavior was measured annually by the Developmental Behavior Checklist for children with intellectual disability (DBC) and a Dutch questionnaire to evaluate social behavioral problems in children, the Children's Social Behavior Questionnaire (CSBQ). Problem behavior measured by the DBC in children with PWS was similar compared to peers with comparable intellectual disability. Scores on 'Social disabilities' subscale were however significantly higher compared to the DBC total score (p < 0.01). A lower IQ was associated with more self-absorbed behavior, more communication problems and more problem behavior in general. Problem behavior measured by the CSBQ was similar compared to peers with a comparable intellectual disability, but children with PWS scored significantly higher on the 'Not tuned', 'Understanding', and 'Stereotyped' subscales than the CSBQ total score (p < 0.05 for all subscales and p = 0.001 for the 'Not tuned'-subscale). There were no significant effects of GH treatment during the RCT and 8 years of GH treatment. Children with PWS showed similar problem behavior as a reference population with a comparable intellectual disability. Social problems were the most pronounced within-problem behavior in PWS. In contrast to our expectations and parents reports, our study shows no improvement but also no deterioration of behavioral problems in children with PWS during long-term GH treatment.

The Effect of Progressive Resistance Exercise Training on Cardiovascular Risk Factors in People with Intellectual Disabilities: A Study Protocol.

Progressive resistance exercise training (PRET) reduces cardiovascular risk factors (CVRF) in the general population. It is unknown if PRET also reduces these risk factors in adults with intellectual disabilities (ID). The aim is to present the protocol of an intervention study that investigates the effect of PRET on CVRF in adults with ID. We will use a repeated time series design with one study group. Adults with mild-to-moderate ID and at least two CVRF are eligible (Netherlands Trial Register, NL8382). During a 12-week baseline period, measurements take place at a 6-week interval. After this, the PRET programme starts for 24 weeks, after which all measurements will be repeated. We will use hierarchical regression models, adjusted for sport activity and medication use, to estimate the effect of PRET. After the intervention, the participants will be followed-up for 12 weeks. We will evaluate factors for successful implementation of exercise in daily life. Primary outcomes are: hypertension, obesity, hypercholesterolemia, diabetes, metabolic syndrome. Secondary outcomes are: physical fitness, sarcopenia, physical activity, activities of daily living, falls, challenging behaviour. If our results show that the PRET programme is effective, it may be a promising non-pharmacological intervention to reduce CVRF in adults with ID.

Healthy Ageing and Intellectual Disability study: summary of findings and the protocol for the 10-year follow-up study.

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.

Determining Frailty in People With Intellectual Disabilities in the COVID-19 Pandemic.

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.

Are we still in the dark? A systematic review on personal daily light exposure, sleep-wake rhythm, and mood in healthy adults from the general population.

Insufficient light exposure is assumed to be related to a wide array of health problems, though few studies focus on the role of whole-day light exposure in the habitual setting in the development of these health problems. The current review aims to describe the association between personal light exposure in the habitual setting and sleep-wake rhythm and mood in healthy adults from the general population. Five databases (Embase, Medline Epub, Web of Science, PsycINFO, and Google Scholar) were searched in June 2019. The inclusion criteria included: assessment directly of light exposure on the participants for at least one full day; reporting on both individual personal light exposure and outcomes. The quality of the papers was assessed using the Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies of the National Heart, Lung and Blood Institute. The current review followed the PRISMA guidelines. In total, 8140 papers were identified in the database search. Twenty-five papers were eventually included in this review. All included studies were cross-sectional, and individual light exposure was usually measured with a wrist-worn device. Five studies received a "good" quality rating, 16 received a "fair" rating, and the remaining 4 a "poor" quality rating. The overall quality of the included studies was considered low because of the lack of intervention studies and the fact that light exposure was measured on the wrist. Given the low quality of the included studies, the current review can only provide a first exploration on the association between light exposure and sleep-wake rhythm and mood in healthy adults from the general population. Limited evidence is presented for a positive relationship between the amount and timing of light exposure on the one hand and rest-activity rhythm and some estimates of sleep architecture on the other. The evidence on an association between light exposure and circadian phase, sleep estimates, sleep quality, and mood is conflicting. Data from intervention studies are needed to gain insight into the causal mechanism of the relationship between light exposure and sleep-wake rhythm and mood.

Efficacy and tolerability of brivaracetam in patients with intellectual disability and epilepsy.

Patients with intellectual disability (ID) are often excluded from clinical trials, and little is known about the best approach to treat their epilepsy. Brivaracetam (BRV) is a new antiepileptic drug (AED) for adjunctive treatment in patients with focal-onset seizures with or without secondary generalization. We analyzed the efficacy and tolerability of BRV in patients with ID and epilepsy who either had or had not previously received treatment with levetiracetam (LEV). Data on efficacy and tolerability were retrospectively collected. After the initial start of BRV in our tertiary epilepsy center, we analyzed medical records at 0, 3, 6 and 12 months of follow-up. 116 patients were included (mean age = 34.9 years, 44% female). All had complete data of 3-month follow-up, 76 of 6-month follow-up, and 39 patients of 1-year follow-up. Median starting dose of BRV was 50.0 mg/day and the mean number of concomitant AEDs was 2.6. Seizure reduction and no side effects were reported in more than half of all patients. The most reported side effects were somnolence, dizziness and aggression. Retention rates for BRV were 84.4%, 75.5% and 58.1% after 3, 6 and 12 months, respectively. Seizure reduction and side effects did not differ significantly between the groups with or without previous LEV treatment. We demonstrate that BRV is effective and well tolerated in patients with epilepsy and ID, even in those where previous LEV treatment failed.

Comparison of sleep-wake rhythms in elderly persons with intellectual disabilities and the general population.

BACKGROUND: Sleep problems are common in people with intellectual disabilities (ID), but the knowledge on the natural course of sleep-wake rhythms and sleep problems in elderly persons with ID is limited. In the current study, objectively measured sleep-wake rhythms and the prevalence and severity of sleep problems of elderly persons with ID was compared to that of healthy elderly persons from a large representative sample from the general population. METHODS: Actigraphy data of 501 elderly persons with ID (age 62.02 ± 8.02 years, 48% female) from the Healthy Ageing and Intellectual Disabilities study was compared to the data of 1734 elderly persons from the general population (age 62.24 ± 9.34 years, 53% female) from the Rotterdam Study. Main outcome variables were Interdaily stability (IS) and Intradaily variablitiy (IV), total sleep time (TST), Waking after sleep onset (WASO), Short sleep (TST<6 h), Night waking (WASO >90 min). RESULTS: Elderly persons with ID had less stable sleep wake rhythms than elderly persons from the general population (IS = 0.70 ± 0.17, vs 0.80 ± 0.10 z = -8.00). Their sleep-wake rhythm was also more fragmented (IV = 0.56 ± 0.26 vs 0.42 ± 0.13 respectively, z = 8.00). Elderly persons with ID slept on average 60.09 min longer than elderly persons from the general population, and lay awake 48.28 min longer after sleep onset. Short sleep in elderly persons with ID was less prevalent (20.7% vs 30.2%) but more severe (TST in Short sleep; 5.13 ± 0.80 h vs 5.39 ± 0.50 h, z = -2.76) then in elderly persons from the general population. Night waking was more prevalent (63.0% vs 17.7%) and more severe in elderly persons with ID (WASO in Night waking; 150.39 ± 54.72 min vs 111.60 ± 17.95 min, z = 7.06). CONCLUSION: The differences in sleep-wake rhythms, prevalence and severity of sleep problems between elderly persons with and without ID are marked and possibly explained by medical, psychiatric conditions and lifestyle in elderly persons with ID. Better understanding of sleep in elderly with ID is needed to improve the quality of sleep in this population and to diminish health problems related to a disruption of sleep.

High prevalence of central adrenal insufficiency in patients with Prader-Willi syndrome.

CONTEXT: The annual death rate of Prader-Willi syndrome (PWS) patients is very high (3%). Many of these deaths are sudden and unexplained. OBJECTIVE: Because most deaths occur during moderate infections and PWS patients suffer from various hypothalamic insufficiencies, we investigated whether PWS patients suffer from central adrenal insufficiency (CAI) during stressful conditions. DESIGN: Overnight single-dose metyrapone tests were performed. Metyrapone (30 mg/kg) was administered at 2330 h. At 0400, 0600, and 0730 h, ACTH, 11-deoxycortisol, cortisol, and glucose levels were measured. Diurnal salivary cortisol profiles were assessed on a different day at wake-up, 30 min after wake-up, at 1400 h, and at 2000 h. SETTING: The study was conducted in a pediatric intensive care unit. PATIENTS: Patients included 25 randomly selected PWS patients. MAIN OUTCOME MEASURE: Patients were considered as having CAI when ACTH levels remained below 33 pmol/liter at 0730 h. RESULTS: Median (interquartile range) age was 9.7 (6.8-13.6) yr. Fifteen patients (60%) had an insufficient ACTH response (CAI, P < 0.001). There was no significant difference in age, gender, genotype, and body mass index SD score between patients with CAI and those without. Morning salivary cortisol levels and diurnal profiles were normal in all children, suggesting that CAI becomes apparent only during stressful conditions. CONCLUSIONS: Strikingly, 60% of our PWS patients had CAI. The high percentage of CAI in PWS patients might explain the high rate of sudden death in these patients, particularly during infection-related stress. Based on our data, one should consider treatment with hydrocortisone during acute illness in PWS patients unless CAI has recently been ruled out with a metyrapone test.

Randomized controlled GH trial: effects on anthropometry, body composition and body proportions in a large group of children with Prader-Willi syndrome.

BACKGROUND: Prader-Willi syndrome (PWS) children have impaired growth, and abnormal body composition. Previous 1-year controlled studies showed improvement of height and body composition during GH-treatment. OBJECTIVE: To evaluate growth, body composition and body proportions during GH-treatment in a large group of PWS children. DESIGN/PATIENTS: We performed a randomized controlled GH trial in 91 prepubertal PWS children (42 infants, 49 children, aged 3-14 years). After stratification for age, infants were randomized to GH-treatment (GH-group; 1 mg/m(2)/day; n = 20), or no treatment (control group; n = 22) for 1 year. In the second year all infants were treated with GH. After stratification for BMI, children > 3 years of age were randomized to GH-treatment (GH-group; 1 mg/m(2)/day; n = 27) or no treatment (control group; n = 22) for 2 years. Anthropometric parameters were assessed once in every 3 months. Body composition was measured by Dual Energy X-ray Absorptiometry. RESULTS: Median (interquartile range, iqr) height SDS increased during 2 years of GH in infants from -2.3 (-2.8 to -0.7) to -0.4 (-1.1-0.0) and in prepubertal children from -2.0 (-3.1 to -1.7) to -0.6 (-1.1 to -0.1). In non-GH-treated children height SDS did not increase. Head circumference completely normalized during 1 and 2 years of GH in infants and children, respectively. Body fat percentage and body proportions improved in GH-treated children, but did not completely normalize. Lean body mass SDS improved compared to the control group. Serum IGF-I increased to levels above the normal range in most GH-treated children. CONCLUSIONS: Our randomized study shows that GH-treatment in PWS children significantly improves height, BMI, head circumference, body composition and body proportions. PWS children are highly sensitive to GH, suggesting that monitoring of serum IGF-I is indicated.

Cognition and behavior in pre-pubertal children with Prader-Willi syndrome and associations with sleep-related breathing disorders.

Prader-Willi syndrome (PWS) is characterized by hypotonia, hypogonadism, obesity, and short stature. Neurobehavioral abnormalities, cognitive impairment, and sleep-related breathing disorders (SRBD) are common. In the general population associations between neurobehavioral and cognitive abnormalities and SRBD have been found. We investigated cognition, behavior, and SRBD in children with PWS. Thirty-one pre-pubertal PWS children were evaluated (5 with paternal deletion, 14 with maternal disomy, 4 with imprinting-center mutation, and in 8 the defect was not specified). Cognition was assessed by Wechsler scale subtests, and behavior by parent-questionnaires. Polysomnography was performed. Cognition, behavior, and associations with SRBD were evaluated. All cognitive subtests were significantly below O SDS, with the lowest median (interquartile range) scores for the Block design subtest (-2.7 SDS (-3.0 to -0.3)). In 60%, verbal subtests were less affected than performance subtests. Parents reported problem behavior related to "emotions/behavior not adapted to the social situation" and "insensitivity to social information." All children had SRBD, with an Apnea Hypopnea Index of 4.1/hr (2.6-7.9). One performance subtest score was significantly higher in children with better sleep efficiency, and daytime sleepiness was associated with more autistic-like social impairment. In contrast to our expectations, behavior was worse in children with better sleep-related breathing. In pre-pubertal PWS children, cognition is impaired. Neurobehavioral abnormalities are common, particularly autistic-like social impairment. Sleep efficiency was associated with better performance on one of the performance subtests, and neurobehavioral abnormalities were associated with daytime sleepiness. In contrast, we could not confirm a positive association of neurobehavioral abnormalities with SRBD in PWS.

Gait Characteristics of Adults With Intellectual Disability.

Gait is a relevant and complex aspect of motor functioning. Disturbances are related to negative health outcomes. Gait characteristics of 31 adults with intellectual disability (ID) without Down syndrome (DS) (42.77±16.70 years) were investigated, and associations with age, sex, body mass index (BMI), and level of ID were assessed. Sex and BMI were significantly associated with some of the gait parameters, while age and level of ID were not. Gait characteristics of adults with ID seem to be comparable to those of the general population of older adults (average 20 years older), except that adults with ID seem to spend less time in stance and double support phase and walk more variable and with a broader base of support.

Physicians' identification of the need for palliative care in people with intellectual disabilities.

BACKGROUND: A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care. AIMS: We aimed to explore how the need for palliative care is recognized in people with ID. METHODS AND PROCEDURES: We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands. OUTCOMES AND RESULTS: Identification of people with ID in need for palliative care mostly results from a process in which multiple signals from different information sources converge and lead to a growing awareness. As a result, ID-physicians do not expect people to return to their prior level of health or functioning, but rather expect an irreversible decline leading to death. The presence, stage and prognosis of the disease, physician-patient interaction, and communication with proxies who provide contextual information are factors influencing the process. CONCLUSIONS AND IMPLICATIONS: Distinctive for a population of people with ID are the frequent diagnostic uncertainty in people with ID, the patients' communicational abilities and the reliance of ID-physicians on close proxies. We argue for a proactive attitude of physicians regarding care and support of people with ID with palliative care needs.