In de rubriek ‘Elders gepubliceerd’ zetten we relevante nieuwe literatuur voor artsen VG op een rij. Deze editie bundelt onder andere onderzoek naar gezondheidsproblemen bij volwassenen met een verstandelijke beperking in de huisartsenpraktijk, de haalbaarheid van haarhormoonmetingen als biomarker voor chronische stress, en het voorspellen van succesvolle afbouw van off-label antipsychotica.
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- Update on health problems of people with intellectual disabilities in general practice: dynamic cohort study between 2012 and 2021 with Dutch routine care data.
- Feasibility of Measuring Hair Glucocorticoids as a Potential Biomarker for Chronic Stress in Older Adults With Intellectual Disabilities.
- Transition From Children’s to Adults’ Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline.
- Off-Label Antipsychotic Withdrawal in People With Intellectual Disabilities: Development and Internal Validation of a Prediction Model.
- Cardiovascular Disease Incidence and Risk Factors in Older Adults With Intellectual Disabilities: Results of the Healthy Ageing and Intellectual Disabilities Study.
- PTSD Symptoms After Traumatic Versus Stressful Life Events in People With Mild Intellectual Disabilities: Proving the Null.
Update on health problems of people with intellectual disabilities in general practice: dynamic cohort study between 2012 and 2021 with Dutch routine care data.
Heutmekers M, Schalk B, Uijen A, Naaldenberg J, Leusink G, Cuypers M. Update on health problems of people with intellectual disabilities in general practice: dynamic cohort study between 2012 and 2021 with Dutch routine care data. Br J Gen Pract. 2025 Sep 2:BJGP.2025.0084. doi: 10.3399/BJGP.2025.0084. Epub ahead of print. PMID: 40897508.
Background: Despite advancements in healthcare, patients with intellectual disabilities in many countries continue to face barriers in accessing and utilizing primary care. Implementation of improvements in accessibility and quality of care requires up-to-date and accurate insights in their health problems.
Aims: To investigate health problems in patients with ID in GP care compared with matched patients without ID. Design and Setting Retrospective dynamic cohort study using data from more than 80 Dutch general practices.
Methods: All adult patients with indicators of ID, registered at any participating general practice for a minimum of one year between 2012 and 2021 were included, and individually matched (1:5) with persons without ID. Patients’ characteristics, encounters, symptoms, diagnoses, and prescribed medication were retrieved.
Results: Patients with ID visited their GP almost twice as often than patients without ID, presented with a broader range of symptoms and diagnoses across various body systems, and were more frequently prescribed medication. Largest relative difference was seen for depression, which was nearly twice as common in patients with ID compared to those without.
Conclusions: The health problems and prescription patterns of people with ID in general practice remain distinct from those without ID but largely mirror findings from two decades ago. These patterns still fit well within the scope of general practice, yet, underscore the continuing need for GPs to recognize these differences and adapt their care to address the specific needs of their patients with ID.
Feasibility of Measuring Hair Glucocorticoids as a Potential Biomarker for Chronic Stress in Older Adults With Intellectual Disabilities
Dijkema JS, Böhmer MN, Bindels PJE, Maes-Festen DAM, Oppewal A. Feasibility of Measuring Hair Glucocorticoids as a Potential Biomarker for Chronic Stress in Older Adults With Intellectual Disabilities J Intellect Disabil Res. 2025 Oct;69(10):1032-1041. doi: 10.1111/jir.70040. Epub 2025 Sep 9. PMID: 40922662; PMCID: PMC12576375.
Background: Chronic stress can significantly impact health, leading to conditions such as cardiovascular disease and mental health issues. Detecting chronic stress in older adults with intellectual disabilities (ID) is challenging, but measuring scalp hair glucocorticoids (HairGC) may offer a solution. This study aims to investigate the feasibility of measuring HairGC in older adults with ID and assess reasons for failed sample collection and analysis.
Methods: Hair samples were collected in the Healthy Ageing and Intellectual Disabilities (HA-ID) cohort study (n = 278, 71.3 years [SD 6.2]). Feasibility was described as overall feasibility (percentage of successful measurements out of the total group) and quantified by consent rate (participants who consented for hair sample collection), collection rate (successfully collected hair samples from those who consented), and analysis rate (successfully analysed samples). Rates were categorised as low (< 25%), moderate (≥ 25-< 50%), good (≥ 50-< 75%) or excellent (≥ 75%), with stricter cutoffs for analysis rate (low: < 75%, moderate: ≥ 75-< 85%, good: ≥ 85-< 95%, excellent: ≥ 95%). Feasibility rates and reasons for failed collection and analysis were analysed for the total group and subgroups by age, sex and level of ID.
Results: The feasibility of consent rate (204/278; 73%), collection rate (103/204; 50%) and analysis rate (89/103; 86%) was good. Overall, HairGCs were successfully measured for 89 out of 278 participants (32%), showing a moderate overall feasibility. Reasons for collection failure (n = 101/204) were hair that was too short or too thin (n = 65, 64%), resistance (n = 9, 9%), no-shows (n = 5, 5%), other reasons (n = 9, 9%) and unknown reason (n = 13, 13%). Reasons for analysis failure (14/103) were not enough material (n = 12, 86%) and lost samples (n = 2, 14%). Overall feasibility rate was lower in males (15%) than in females (50%; p < 0.001) and higher in participants with moderate ID (42%) than in those with severe and profound ID (25%; p = 0.004).
Conclusions: Overall feasibility of measuring HairGCs in older adults with ID was moderate. Feasibility was lower in males, with insufficient hair length/thickness as the main limitation, and higher in participants with moderate ID. HairGC measurement appears most feasible in females and less so in balding males, limiting its broader applicability as a stress measurement tool in an older population.
Transition From Children’s to Adults’ Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline
Klein Haneveld MJ, Świeczkowska K, Grybek T, Labunets K, van Amelsvoort TAMJ, Bedeschi MF, Behan C, Dufke A, Dupont J, Gaasterland CMW, Garavelli L, Helverschou SB, McAnallen S, Milska-Musa KA, van Staa A, Streață I, Stumpel CTRM, Tamburrino F, Vasseghi M, Vyshka K, Wierzba JM; ERN‐ITHACA Guideline Working Group; van Eeghen AM. Transition From Children’s to Adults’ Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline. J Intellect Disabil Res. 2025 Oct 20. doi: 10.1111/jir.70049. Epub ahead of print. PMID: 41115693.
Background: For young people with rare genetic neurodevelopmental disorders associated with intellectual disabilities, the transfer from paediatric to adult healthcare providers is often complicated. The European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to improve this transition through the development of a guideline.
Method: Population-specific recommendations for the optimal transition to adult healthcare were developed by an interdisciplinary consortium, representing clinical, scientific and lived experience experts from nine European countries. Recommendations of the 2016 National Institute for Health and Care Excellence (NICE) guideline ‘Transition From Children’s to Adults’ Services for Young People Using Health or Social Care Services’ (NG43) were adapted, based on a literature review, expert opinion and lived experiences gathered through a survey, focus groups and discussions with self-advocates. A consensus meeting was held in Gdańsk, Poland, in October 2024.
Results: NICE guideline recommendations were adopted or adapted to the target population where necessary. New recommendations were formulated regarding the involvement of and assistance for young people and their families/caregivers, the coordination of interdisciplinary care, the role of centres of expertise, recommended interventions and psychosocial support.
Conclusions: Planned, coordinated, specialised, individualised and interdisciplinary healthcare is required to support young people with (genetic) intellectual disabilities. Active collaboration between healthcare providers, researchers and individuals with lived experience is essential both to improve current healthcare and to build a stronger evidence base for successful transition interventions going forward.
Off-Label Antipsychotic Withdrawal in People With Intellectual Disabilities: Development and Internal Validation of a Prediction Model
Weijgertze-Lanser J, Wissing MBG, Elbers RG, Jonker J, de Kuijper GM, Maes-Festen DAM. Off-Label Antipsychotic Withdrawal in People With Intellectual Disabilities: Development and Internal Validation of a Prediction Model. J Intellect Disabil Res. 2025 Oct;69(10):1042-1050. doi: 10.1111/jir.70038. Epub 2025 Sep 4. PMID: 40908653; PMCID: PMC12576382.
Background: Off-label antipsychotic use in people with intellectual disabilities and challenging behaviour is high. Antipsychotic withdrawal is recommended, but attempts are often unsuccessful. This study aimed to develop and internally validate a prediction model that provides insight into predicting factors for unsuccessful (i.e. incomplete) off-label antipsychotic withdrawal attempts in people with intellectual disabilities.
Methods: Data collected in two previous studies examining the withdrawal of off-label antipsychotics in people with intellectual disabilities and challenging behaviour living mostly in 24/7 care settings (98.6%) in the Netherlands were analysed. The dataset included 141 participants (64.5% male, median age 52). We selected candidate predictors (age, level of intellectual disability, defined daily dose, autism spectrum disorder and three subscales of the Aberrant Behavior Checklist [ABC], namely stereotypy, hyperactivity and lethargy) based on previous research and clinical relevance. A multivariable logistic regression analysis with backward selection procedures was conducted to identify significant predictors. The model was internally validated using bootstrapping procedures.
Results: The analysis revealed the level of intellectual disability (p = 0.030, OR = 2.374), defined daily dose (p = 0.063, OR = 2.833), and ABC stereotypy (p = 0.007, OR = 1.106) as key predictors for unsuccessful withdrawals. The variables explained 20% of the variance (Nagelkerke’s R-square, R2 = 0.200). The model calibrated well as the Hosmer and Lemeshow test was not significant. The discrimination of the model was fair to good; the Area Under the Curve (AUC) was 0.728. Internal validation procedures showed an optimism-corrected AUC of 0.706; the optimism-corrected Nagelkerke’s R2 was 0.157.
Conclusions: The odds of unsuccessful withdrawal increase with a more severe level of intellectual disability, a higher antipsychotic defined daily dose and higher stereotypy scores. The results inform healthcare providers about the predictive factors enabling them to better anticipate and support future withdrawal attempts.
Cardiovascular Disease Incidence and Risk Factors in Older Adults With Intellectual Disabilities: Results of the Healthy Ageing and Intellectual Disabilities Study
de Leeuw MJ, Böhmer MN, Bindels PJE, Maes-Festen DAM, Oppewal A. Cardiovascular Disease Incidence and Risk Factors in Older Adults With Intellectual Disabilities: Results of the Healthy Ageing and Intellectual Disabilities Study. J Intellect Disabil Res. 2025 Nov;69(11):1261-1271. doi: 10.1111/jir.70004. Epub 2025 Jul 1. PMID: 40598919; PMCID: PMC12576365.
Background: Previous research has shown that older adults with intellectual disabilities are at increased risk of cardiovascular diseases (CVD). However, longitudinal studies investigating the actual incidence of CVD and its associated risk factors in this population are limited. Such research is essential for optimising healthcare delivery and informing effective resource allocation. Therefore, this study aimed to examine CVD incidence in older adults with intellectual disabilities and explore its associations with participant characteristics and risk factors.
Method: A prospective longitudinal study was conducted in older adults (≥ 50 years) with intellectual disabilities as part of the Healthy Ageing and Intellectual Disabilities study. Baseline measurements were performed in 2009-2010, with follow-up assessments, including medical record reviews, in 2020-2023. Incidence rates for myocardial infarction (MI), heart failure (HF) and stroke were calculated by sex and 10-year age categories. Competing risk analysis was performed to examine the associations between CVD diagnoses during follow-up and baseline participant characteristics/CVD risk factors, accounting for mortality as a competing risk.
Results: Among 598 participants (62.0 ± 8.5 year; 49.3% female), with a mean follow-up of 8.6 years, incidence rates were 2.3 per 1000 person years for MI, 7.2 for HF, and 5.3 for stroke. Hypertension (HR 3.17; p < 0.001), Down syndrome (HR 2.66; p < 0.01) and antipsychotic use (HR 1.98; p = 0.04) were associated with an increased CVD risk during follow-up.
Conclusions: A lower incidence of MI and similar to higher incidence of HF and stroke were found in older adults with intellectual disabilities than in the general population. Further research, including a focus on the association of CVD incidence with Down syndrome, is needed. Meanwhile, proactive assessment and management of CVD risk factors, such as hypertension and antipsychotic use, are important for improving cardiovascular health in older adults with intellectual disabilities.
PTSD Symptoms After Traumatic Versus Stressful Life Events in People With Mild Intellectual Disabilities: Proving the Null
Rouleaux M, Peters-Scheffer N, Bouwmeester S, Lindauer R, Mevissen L, Didden R. PTSD Symptoms After Traumatic Versus Stressful Life Events in People With Mild Intellectual Disabilities: Proving the Null. J Intellect Disabil Res. 2025 Dec;69(12):1403-1412. doi: 10.1111/jir.70034. Epub 2025 Sep 5. PMID: 40910378; PMCID: PMC12580472.
Background: Research in people without ID suggests that both traumatic events (i.e., A criterion events) and stressful life events (i.e., non-A criterion events) can produce PTSD symptoms. However, research on this subject in ID populations is limited. The discussion about the usefulness of Criterion A (i.e., the stressor criterion) as a gate criterion for PTSD in the DSM-5-TR is particularly important for people with mild intellectual disabilities (MID) or borderline intellectual functioning (BIF) because of their vulnerability to stressors. This study aimed to compare PTSD symptoms and impairment of daily life functioning (IDLF) score following traumatic versus stressful index events in people with MID-BIF.
Methods: The Diagnostic Interview Trauma and Stressors-Intellectual Disability (DITS-ID) was administered to 54 participants with MID-BIF. Two groups were generated based on the type of index event (i.e., traumatic or stressful). Bayesian equivalence testing was used to assess whether the two groups differed in terms of PTSD symptoms and IDLF score.
Results: Data were more consistent with either a small difference or no difference at all between the traumatic (N = 22) and stressful group (N = 32) regarding the mean number of PTSD symptoms and the mean IDLF score. Differences in PTSD symptoms and IDLF scores ranged from 0.00 to 0.87.
Conclusion: No clinically relevant differences were found between the traumatic and stressful groups in terms of mean number of PTSD symptoms and IDLF score. Stressful life events might produce PTSD symptoms in people with MID-BIF.
Dit artikel komt uit de december-editie van TAVG 2025.
