In de rubriek ‘Elders gepubliceerd’ zetten we relevante nieuwe literatuur voor artsen VG op een rij. Deze editie bundelt onder andere onderzoek naar transitie van kind- naar volwassenenzorg bij jongeren met EMB, de impact van sarcopenie op sterfte bij ouderen met een verstandelijke beperking, de haalbaarheid van fitnesstesten en interventies rond fysieke activiteit, differentiatie van crisistypen en diagnostiek van PTSS bij volwassenen met (ernstige) verstandelijke beperkingen.
Snel naar de publicaties:
- Factors Influencing the Implementation of Transitional Care for Adolescents With Profound Intellectual and Multiple Disabilities: Experiences of Dutch Healthcare Professionals
- Sarcopenia predicts 5-year mortality in older adults with intellectual disabilities
- Feasibility of Physical Fitness Measurements in Older Adults With Intellectual Disabilities Within Two Large Cohort Studies: The HA-ID and IDS-TILDA Study
- Exploring the Barriers and Facilitators to Physical Activity Behaviour in Older Adults With Intellectual Disabilities: Lessons From and for a Co-Design Study
- Differentiatie van crisis bij mensen met een verstandelijke beperking [Differentiating crises in people with intellectual disabilities]
- Assessment of Posttraumatic Stress Disorder in Adults With Severe or Moderate Intellectual Disability Using the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability
Factors Influencing the Implementation of Transitional Care for Adolescents With Profound Intellectual and Multiple Disabilities: Experiences of Dutch Healthcare Professionals
Ooms I, van Staa A, Witkamp E, van der Heide A. Factors Influencing the Implementation of Transitional Care for Adolescents With Profound Intellectual and Multiple Disabilities: Experiences of Dutch Healthcare Professionals. J Intellect Disabil Res. 2026 Mar 13. doi: 10.1111/jir.70101. Epub ahead of print. PMID: 41823085.
Background: The transition from paediatric to adult healthcare is particularly challenging for adolescents with profound intellectual and multiple disabilities (PIMD) and their families. This study aims to identify factors that Dutch healthcare professionals perceived as relevant to successful implementation of transitional care for adolescents with PIMD.
Methods: Semi-structured interviews were conducted with 20 professionals working in paediatric and adult healthcare. Data were analysed using directed content analysis, guided by Flottorp’s checklist (2013) on preventing and enabling factors of improvements in healthcare.
Results: Transitional care approaches vary at interpersonal, organisational and environmental levels. Enabling factors were parental self-reliance and competencies, a holistic perspective, professional networks, continuity and coordination of care, flexibility to deviate from standards and guidance from nonmedical actors. Preventing factors were family burden and emotions, suboptimal information transfer, insufficient agenda-setting, shortages of expert physicians and legal and administrative challenges. Continuous parental involvement and appropriate financial funding were enabling. The provision of person-centred care was considered essential.
Conclusions: Successful implementation of transitional care for adolescents with PIMD is a multifaceted process characterised by structural and personal challenges. Providing person-centred care increases the likelihood of appropriate transitional care in PIMD-care.
Keywords: PIMD; implementation; preventing and enabling factors; profound intellectual and multiple disabilities; transitional care.
Sarcopenia predicts 5-year mortality in older adults with intellectual disabilities
Valentin B, Maes-Festen D, Schoufour J, Oppewal A. Sarcopenia predicts 5-year mortality in older adults with intellectual disabilities. J Intellect Disabil Res. 2023 Nov;67(11):1161-1173. doi: 10.1111/jir.13078. Epub 2023 Aug 22. PMID: 37608512.
Background: People with intellectual disabilities (ID) have a lower life expectancy than their peers without ID. A contributing factor to the lower life expectancy and early mortality could be sarcopenia: low muscle mass and low muscle function. In the general population, sarcopenia strongly predicts early mortality, but this association is unknown in people with ID. Therefore, this study aims to explore the association between sarcopenia and 5-year mortality in older adults with ID.
Methods: In the Healthy Ageing and Intellectual Disabilities (HA-ID) study, the prevalence of sarcopenia was measured at baseline among 884 older adults (≥50 years) with ID. All-cause mortality was measured over a 5-year follow-up period. Univariable and multivariable Cox proportional hazard models were applied to determine the association between sarcopenia (no sarcopenia, pre-sarcopenia, sarcopenia, severe sarcopenia) and early mortality, adjusted for age, sex, level of ID, presence of Down syndrome, and co-morbidity (chronic obstructive pulmonary disease, diabetes type 2 and metabolic syndrome).
Results: The unadjusted hazard ratio (HR) for sarcopenia was 2.28 [95% confidence interval (CI) 1.48-3.42], P < 0.001), and 2.40 (95% CI 1.40-4.10, P = 0.001) for severe sarcopenia. When adjusted for age, sex, level of ID, and Down syndrome, sarcopenia (HR = 1.72, 95% CI 1.08-2.75, P = 0.022) and severe sarcopenia (HR = 1.86, 95% CI 1.07-3.23, P = 0.028) were significantly associated with early mortality. When additionally adjusted for co-morbidity, the adjusted HR decreased to 1.62 (95% CI 1.02-2.59, P = 0.043) and 1.81 (95% CI 1.04-3.15, P = 0.035) for sarcopenia and severe sarcopenia, respectively.
Conclusion: Sarcopenia is an independent risk factor for early mortality in older adults with ID over a 5-year follow-up period. Our results stress the need to delay the incidence and development of sarcopenia in older adults with ID.
Feasibility of Physical Fitness Measurements in Older Adults With Intellectual Disabilities Within Two Large Cohort Studies: The HA-ID and IDS-TILDA Study
Oppewal A, Lynch L, Burke E. Feasibility of Physical Fitness Measurements in Older Adults With Intellectual Disabilities Within Two Large Cohort Studies: The HA-ID and IDS-TILDA Study. J Intellect Disabil Res. 2026 Apr 9. doi: 10.1111/jir.70103. Epub ahead of print. PMID: 41956913.
Background: Research has shown significant underdiagnoses in adults with intellectual disabilities, highlighting the need for objective health measurements to prevent overshadowing. Physical fitness, crucial for health and functioning, is consistently poor in this population, increasing the risk of adverse outcomes. Fitness tests are promising but to date lack specific reference values from large datasets for broader applicability. This study examines the feasibility of four physical fitness tests in two large European cohort studies, IDS-TILDA in Ireland and the HA-ID study in the Netherlands, to address barriers and improve inclusion in research and care.
Method: This study used data from IDS-TILDA (40+ years) and HA-ID (60+ years) cohort studies. Static balance was measured by the capability of maintaining three stances; muscle strength was measured as grip strength; muscular endurance was measured with the Five-Times Chair Stand; and cardiorespiratory fitness was measured with the Two-Minute Step Test. Reasons for non-compliance were documented. The feasibility of these tests and reasons for non-successful performance were described for the total group and across participant characteristics.
Results: The IDS-TILDA sample was younger than the HA-ID sample, with more participants being independent in mobility. All fitness tests showed moderate to good feasibility, except the Full-Tandem stance in the IDS-TILDA sample. Lower feasibility was found in adults with severe and profound intellectual disabilities, walking aids and wheelchair users. Key barriers for participation were physical limitations and difficulties understanding the task.
Conclusions: This study showed overall moderate to good feasibility. Physical limitations and difficulties understanding the task were important barriers, emphasising the need for the person-centred approach taken by both studies. Feasibility for including standardised physical fitness assessments, with a person-centred approach, in large cohort studies is shown. Including physical fitness assessment is recommended to allow for comparability and combining of data for more knowledge on physical fitness in adults with intellectual disabilities.
Exploring the Barriers and Facilitators to Physical Activity Behaviour in Older Adults With Intellectual Disabilities: Lessons From and for a Co-Design Study
Adriaanse K, Kraal JJ, Bunskoek MS, Oppewal A, Vegt NJH. Exploring the Barriers and Facilitators to Physical Activity Behaviour in Older Adults With Intellectual Disabilities: Lessons From and for a Co-Design Study. J Intellect Disabil Res. 2026 May;70(5):541-550. doi: 10.1111/jir.70094. Epub 2026 Mar 10. PMID: 41808382; PMCID: PMC13065436.
Background: Physical activity (PA) is one of the core components of healthy ageing. For older adults with intellectual disabilities (ID), PA is even more important because they often have a more sedentary and inactive lifestyle and more health problems than do older adults without ID. To promote PA, we explored personal and contextual barriers and facilitators to PA for this group.
Methods: We used a research-through-design approach with six older adults with ID in a specific care home facility. By applying co-design methods, older adults with ID, caregivers and other stakeholders were involved from the beginning in (1) listing barriers and facilitators, (2) exploring PA-promoting interventions and (3) adapting co-design methods to the target group.
Results: Our work resulted in a list of barriers and facilitators for the participants to perform PA, related to the personal characteristics of the participants, the provided PAs and the physical and social context. Further, a PA-stimulating intervention prototype and lessons learned regarding co-design with older adults with ID were developed. It became clear that a modular, adaptive intervention is necessary to accommodate the individual needs and wishes of older adults with ID. The same adaptive approach was required to meaningfully involve them in the research and design process.
Conclusions: Older adults with ID cannot be regarded as a homogeneous group, and there is no one-size-fits-all solution for promoting their PA. Basic components for an intervention can be provided, yet they always require adaptations to personal and contextual circumstances. The identified barriers and facilitators, intervention prototype and co-design lessons can provide guidance for creating tailored interventions.
Differentiatie van crisis bij mensen met een verstandelijke beperking [Differentiating crises in people with intellectual disabilities]
Wieland J. Differentiatie van crisis bij mensen met een verstandelijke beperking [Differentiating crises in people with intellectual disabilities]. Tijdschr Psychiatr. 2026;68(3):131-134. Dutch. PMID: 41944473.
Background: Crises in people with intellectual disabilities often occur at the intersection of mental health care (MHC) and intellectual disability care (IDC). Different actors and crisis regulations with their own definitions and agreements make appropriate care challenging. Effective collaboration between MHC and IDC is essential but often not structurally organized.
Aim: To distinguish between different types of crises in order to promote shared perceptions and a common language between MHC and IDC. This will improve the coordination of interventions and make cooperation between professionals more effective.
Method: Based on clinical experience and scientific background, I propose a model with four types of crises: contextual crisis, somatic crisis, overburdening, and psychiatric crisis.
Results: Better differentiation between different types of crises can be advantageous for people with intellectual disabilities. It ensures a shared perception and common language across domains, leading to better task distribution and cooperation between the various professionals involved.
Conclusion: Better differentiation of crises can improve collaboration between MHC and IDC. This model provides tools for joint crisis management and can further improve care in the future.
Assessment of Posttraumatic Stress Disorder in Adults With Severe or Moderate Intellectual Disability Using the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability
Hoogstad A, Bouwmeester S, Mevissen L, Didden R. Assessment of Posttraumatic Stress Disorder in Adults With Severe or Moderate Intellectual Disability Using the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability. J Intellect Disabil Res. 2026 May;70(5):472-480. doi: 10.1111/jir.70084. Epub 2026 Jan 28. PMID: 41604227; PMCID: PMC13065437.
Introduction: Until recently, no diagnostic instrument was available to classify posttraumatic stress disorder (PTSD) in individuals with severe or moderate intellectual disability (SID). This study investigates the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability (DITS-SID), a caregiver-administered interview corresponding with DSM-5(TR) PTSD criteria for children ≤ 6 years. Interrater reliability and convergent and content validity were examined.
Methods: The DITS-SID, Aberrant Behavior Checklist (ABC) and Child and Adolescent Trauma Screener 3-6 (KJTS 3-6) were administered to relatives and professional caregivers of 97 adults with SID.
Results: Interrater reliability was good to excellent. Convergent validity was supported by correlations with ABC and KJTS 3-6 scores. Content validity appeared good as adults who met PTSD symptom criteria had, on average, higher interference scores, higher DITS-SID atypical symptom scores and a greater number of experienced traumas and stressors. No association was found between meeting PTSD symptom criteria and PTSD criterion A.
Conclusion: The DITS-SID appears feasible for classifying PTSD in adults with SID. Future research should evaluate its validity in children with SID.
Dit artikel is onderdeel van het aprilnummer van TAVG 2026.
