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Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. Method: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Results: Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. Conclusions: The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.

Background: Professional support for people with intellectual disabilities is increasingly delivered remotely. Understanding what support workers do to support people with intellectual disabilities remotely, and how they do this, is therefore important. The purpose of this study was to gain insight into the remote support practice of the support staff of the Dutch service DigiContact. Methods: A qualitative study was performed in which we followed an inductive-iterative process and used different sources of information: documents, interviews with people who are supported by DigiContact and their caseworkers, and interviews with DigiContact support workers. Findings: Seven themes were constructed and described. Four themes reflected the support activities of DigiContact support workers, and three themes reflected qualities that guide how the support is provided. Conclusions: A remote support context can bring both challenges and opportunities to the practice of supporting people with intellectual disabilities. The findings can be useful for service organisations who are contemplating the adoption of remote support initiatives for people with intellectual disabilities.

Objectives Methotrexate (MTX) is one of the most commonly used medications to treat rheumatoid arthritis (RA). However, the effect of MTX treatment on cellular immune responses remains incompletely understood. This raises concerns about the vulnerability of these patients to emerging infections and following vaccination.Methods In the current study, we investigated the impact of MTX treatment in patients with immune-mediated inflammatory disease on B and CD4 T cell SARS-CoV-2 vaccination responses. Eighteen patients with RA and two patients with psoriatic arthritis on MTX monotherapy were included, as well as 10 patients with RA without immunosuppressive treatment, and 29 healthy controls. CD4 T and B cell responses were analysed 7 days and 3–6 months after two SARS-CoV-2 messenger RNA vaccinations. High-dimensional flow cytometry analysis was used to analyse fresh whole blood, an activation-induced marker assay to measure antigen-specific CD4 T cells, and spike probes to study antigen-specific B cells.Results Seven days following two SARS-CoV-2 vaccinations, total B and T cell counts were similar between MTX-treated patients and controls. In addition, spike-specific B cell frequencies were unaffected. Remarkably, the frequency of antigen-specific CD4 T cells was reduced in patients using MTX and correlated strongly with anti-RBD IgG antibodies. These results suggest that decreased CD4 T cell activity may result in slower vaccination antibody responses in MTX-treated patients.Conclusion Taken together, MTX treatment reduces vaccine-induced CD4 T cell activation, which correlates with lower antibody responses.Trial registration number NL8900.

BackgroundPeople with structural vulnerabilities (including immigrants, people who use drugs, and those who are unhoused or uninsured) are more likely to experience COVID-19 testing disparities relative to other groups. We documented barriers and facilitators to COVID-19 testing and explored how structural vulnerabilities created and/or exacerbated COVID-19 testing barriers.MethodsBetween 2021 and 2022, we conducted semi-structured interviews with 34 members of structurally vulnerable populations and 27 key informants who provide health and social services to them. Our abductive analysis was iterative, utilizing both inductive and deductive coding processes. Recognizing that adequate and appropriate testing for COVID-19 is a complex health behavior that involves both decision-making and issues related to access, we developed a hybrid model of COVID-19 testing behavior to organize reported barriers. We then used that model for more in-depth analysis of structural vulnerabilities in the context of testing.ResultsOur model of testing behaviors provides a framework for understanding the many barriers and facilitators relevant to COVID-19 testing. After identifying locally-reported barriers, we found that specific conditions—economic precarity, legal precarity, the confusing U.S. healthcare landscape, English-exclusive environments, and stigmatizing medical encounters—make adequate and appropriate testing less likely by making COVID-19 testing feel riskier (entailing legal, financial, and psycho-social risks) and making healthcare, and thus vicariously testing, more difficult to access.ConclusionThe COVID-19 pandemic exposed disparities in health care delivery. To avoid under-testing and its associated health consequences during the next pandemic, public health efforts should address structural conditions to ameliorate risks and bolster testing infrastructure to improve access.

Background: Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs. Method: A mixed-method design was conducted, in which 11 semi-structured interviews were held with psychologists to gain insight into the support needs of older people with intellectual disabilities. Results: The data provide an overview of the support needs of older people with intellectual disabilities in all quality-of-life (QoL) domains. Physical well-being, emotional well-being, interpersonal relationships and self-determination were identified as the most important domains for older people with intellectual disabilities. Conclusions: The findings of this study may guide the development of a specific training for support staff and constitute a valuable contribution to raising awareness among support staff concerning the broad range of support needs existing among older people with intellectual disabilities.

Background: Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic. Method: Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically. Results: Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first. Conclusion: This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic.

Background: Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method: Semi-structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results: Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution-oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions: The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations.

The objective of this 18-month walking intervention was to evaluate the effect on rest–activity rhythm (RAR) for older adults with mild-to-moderate dementia (65.8% female; aged M = 82.4 [SD = 6.5]). The intervention group (n = 44) was intended to walk 30 min, five times per week for 18 months. The control group (n = 35) received sedentary activities or usual care. RAR was measured at baseline to after 18 months and five times in between actigraphy outcome variables (interdaily stability, intradaily variability, relative amplitude, activity 10 most active hours, and activity 5 least active hours). Hierarchical mixed model analyses revealed no significant intervention effects (with or without baseline confounders as covariate) on RAR. However, participants in the intervention group were able to significantly increase their daily life activity (activity 10 most active hours) from the onset of the preceding measurement, b = 0.10, t(239.32) = 2.36, p =.019. More research is warranted to study the effect of regular walks on older persons with dementia whose RAR is worst at baseline. [ABSTRACT FROM AUTHOR]

Abstract Background To estimate the occurrence and type of adverse effects after application of an extra-articular (soft tissue) corticosteroid injection. Methods A systematic review of the literature was made based on a PubMed and Embase search covering the period 1956 to January 2010. Case reports were included, as were prospective and retrospective studies that reported adverse events of corticosteroid injection. All clinical trials which used extra-articular corticosteroid injections were examined. We divided the reported adverse events into major (defined as those needing intervention or not disappearing) and minor ones (transient, not requiring intervention). Results The search yielded 87 relevant studies:44 case reports, 37 prospective studies and 6 retrospective studies. The major adverse events included osteomyelitis and protothecosis; one fatal necrotizing fasciitis; cellulitis and ecchymosis; tendon ruptures; atrophy of the plantar fat was described after injecting a neuroma; and local skin effects appeared as atrophy, hypopigmentation or as skin defect. The minor adverse events effects ranged from skin rash to flushing and disturbed menstrual pattern. Increased pain or steroid flare after injection was reported in 19 studies. After extra-articular injection, the incidence of major adverse events ranged from 0-5.8% and that of minor adverse events from 0-81%. It was not feasible to pool the risk for adverse effects due to heterogeneity of study populations and difference in interventions and variance in reporting. Conclusion In this literature review it was difficult to accurately quantify the incidence of adverse effects after extra-articular corticosteroid injection. The reported adverse events were relatively mild, although one fatal reaction was reported.

Background: The life expectancy of people with intellectual disabilities has increased. The implications of ageing have resulted in changes in their support needs and challenges to support staff. Access to evidence based strategies for support staff providing care to elderly with intellectual disabilities remains scarce. A systematic review was conducted to provide an overview of available psychosocial interventions. Methods: Four databases were searched and assessed according to the PRISMA guidelines. A narrative, integrative method of analysis was conducted to synthesise quantitative and qualitative data. Results: The 36 studies included in the review reported on interventions aimed at either identifying and meeting the needs or perceptions of older individuals or at improving their behaviour and skills. Furthermore, the role of support staff in the implementation of interventions was either active, assisting or undefined. Conclusions: This overview of studies could contribute to the existing body of knowledge and help to optimise psychosocial support for a growing population.

Abstract Background Socio-economic disparities in health status are frequently reported in research. By comparison with education and income, occupational status has been less extensively studied in relation to health status or the occurrence of specific chronic diseases. The aim of this study was to investigate health disparities in the working population based on occupational position and how they were modified by education. Methods Our data were derived from the National Survey of General Practice that comprised 104 practices in the Netherlands. 136,189 working people aged 25–64 participated in the study. Occupational position was assessed by the International Socio-Economic Index of occupational position (ISEI). Health outcomes were self-perceived health status and physician-diagnosed diseases. Odds ratios were estimated using multivariate logistic regression analysis. Results The lowest occupational position was observed to be associated with poor health in men (OR = 1.6, 95% CI 1,5 to 1.7) and women (OR = 1.3, 95% CI 1.2 to 1.4). The risk of poor health gradually decreased in relation to higher occupational positions. People with the lowest occupational positions were more likely to suffer from depression, diabetes, ischaemic heart disease, arthritis, muscle pain, neck and back pain and tension headache, in comparison to people with the highest occupational position (OR 1.2 to 1.6). A lower educational level induced an additional risk of poor health and disease. We found that gender modified the effects on poor health when both occupational position and education were combined in the analysis. Conclusion A low occupational position was consistently associated working people with poor health and physician-diagnosed morbidity. However a low educational level was not. Occupational position and education had a combined effect on self-perceived health, which supports the recent call to improve the conceptual framework of health disparities.

BackgroundIndividuals with intellectual disabilities (ID) are more likely to have problems with executive functioning (EF) and challenging behavior (CB), which are negatively linked to well-being. Among clinical populations, music interventions have been shown to improve various outcome measures, such as CB and EF. Until now, no randomized controlled trials (RCTs) have been conducted to examine the effectiveness of an individual music intervention for adults with ID and CB. ObjectiveThe study aims to identify the effect and feasibility of an individual music intervention compared with care-as-usual for people with ID and CB. MethodsIn this study, a 2-group RCT with a pretest, posttest, and follow-up assessment after 8 weeks is presented. Participants of the music intervention condition will receive 16 individual music sessions within 8 to 10 weeks. The music intervention will be guided by a manual for music workers, in which every session will have a different focus (introduction, emotions, different EF, and end performance). Participants receiving care as usual will function as a control group. After the research is finished, they will be offered a budget, which they can spend on musical activities or musical instruments as they wish. Assessments will include caregiver rating scales and self-report questionnaires and tests, which will assess outcome measures of CB, well-being, depression, anxiety, self-esteem, and 4 domains of EF. A process evaluation will be conducted after the completion of the study, which entails the analysis of data on multiple aspects of the intervention and the study overall. ResultsEnrollment commenced in July 2021, and data collection ended in May 2023. A total of 97 participants were recruited, with 44 participants allocated to the intervention group and 53 allocated to the control group. Data will be analyzed after this protocol has been accepted for publication. ConclusionsBecause there are currently no published RCTs of an individual music intervention for adults with ID and CB, this study will provide insight into the effectiveness and experiences of an individual music intervention for this target group. Trial RegistrationInternational Clinical Trials Registry Platform NL8482; http://tinyurl.com/4565s5pd International Registered Report Identifier (IRRID)DERR1-10.2196/52497

SARS-CoV-2 causes COVID-19, an infectious disease with symptoms ranging from a mild cold to severe pneumonia, inflammation, and even death. Although strong inflammatory responses are a major factor in causing morbidity and mortality, superinfections with bacteria during severe COVID-19 often cause pneumonia, bacteremia and sepsis. Aberrant immune responses might underlie increased sensitivity to bacteria during COVID-19 but the mechanisms remain unclear. Here we investigated whether SARS-CoV-2 directly suppresses immune responses to bacteria. We studied the functionality of human dendritic cells (DCs) towards a variety of bacterial triggers after exposure to SARS-CoV-2 Spike (S) protein and SARS-CoV-2 primary isolate (hCoV-19/Italy). Notably, pre-exposure of DCs to either SARS-CoV-2 S protein or a SARS-CoV-2 isolate led to reduced type I interferon (IFN) and cytokine responses in response to Toll-like receptor (TLR)4 agonist lipopolysaccharide (LPS), whereas other TLR agonists were not affected. SARS-CoV-2 S protein interacted with the C-type lectin receptor DC-SIGN and, notably, blocking DC-SIGN with antibodies restored type I IFN and cytokine responses to LPS. Moreover, blocking the kinase Raf-1 by a small molecule inhibitor restored immune responses to LPS. These results suggest that SARS-CoV-2 modulates DC function upon TLR4 triggering via DC-SIGN-induced Raf-1 pathway. These data imply that SARS-CoV-2 actively suppresses DC function via DC-SIGN, which might account for the higher mortality rates observed in patients with COVID-19 and bacterial superinfections.

OBJECTIVES/GOALS: The objective of this research was to determine the associations of candidate genetic variants withdrug-induced long QT syndrome (diLQTS) risk, an adverse effect of over 150 FDA-approved drugsthat can lead to cardiac arrhythmias and sudden cardiac death. METHODS/STUDY POPULATION: This was a retrospective observational study of the genomic biobank at the University of Michigan Health System. Patients treated with a high-risk QT-prolonging drug and ECG measurements were included. The primary outcome was exaggerated prolongation of the QTc interval (i.e., >60 ms change from baseline and/or >500 ms absolute value) corrected using Bazett. We analyzed 3 genetic variants: KCNE1-D85N (rs1805128), SCN5A-G615E (rs12720452) and KCNE2-I57T (rs7415448) in the dominant genetic model. A Bonferroni-corrected p-value of 0.017 was considered statistically significant using logistic regression adjusted for clinical covariates. RESULTS/ANTICIPATED RESULTS: In total 6,083 self-reported white patients were included (12% event rate). The adjusted odd ratio for KCNE1-D85N was 2.24 (95%CI: 1.35-3.57; p=0.0011). The adjusted odds ratio forKCNE2-I57T was 1.40 (95%CI: 0.26-5.78, p=0.662). Only 4 total patients carried the SCN5A-G615E variant, and none of the carriers had prolonged QTc. DISCUSSION/SIGNIFICANCE: This is the largest study of candidate genetic variants in cardiac ion channels associated with the diLQTS risk. KCNE1-D85N was associated with diLQTS risk, while KCNE2-I57T was suggestive of a potential association. KCNE1-D85N should be considered in clinical guidelines as a risk factor of diLQTS.

Ouderen met een dementie kunnen geconfronteerd worden met een afname in lichamelijke activiteit. Er bestaat een positieve relatie tussen lichamelijke activiteit en cognitie. Ofschoon de causaliteit van deze relatie bij ouderen met een gevorderde dementie nog moet worden aangetoond, komt uit vooral dierexperimenteel onderzoek naar voren welke schadelijke effecten niet bewegen zou kunnen hebben op het gedrag van ouderen met een dementie. Patiënten met een dementie die vanwege agitatie en onrust geïmmobiliseerd worden, kunnen een toename in agitatie en onrust gaan vertonen. Een andere oorzaak van verminderd of niet bewegen kan pijn zijn. Pijn kan zelfs toenemen bij dementie door neuropathologische veranderingen in het centraal zenuwstelsel. Er is toenemende (inter)nationale belangstelling voor de ontwikkeling van een meer betrouwbare diagnostiek en behandeling van pijn, voor de causaliteit van de relatie tussen pijn en lichamelijke (in)activiteit en voor de causaliteit van de relatie tussen lichamelijke (in)activiteit en cognitie. In dit artikel zullen de verschillende onderwerpen in deze volgorde besproken worden.

Fecal calprotectin (FC), chitinase 3-like-1 protein (CHI3L1), S100A12 and osteoprotegerin (OPG) are biomarkers of intestinal inflammation. This cross-sectional study aimed to evaluate these biomarkers in a cohort of children with Crohn’s disease (CD) and compare them with other measures of disease activity. Stool samples from children with CD were used to measure FC, CHI3L1, S100A12 and OPG by enzyme-linked immunosorbent assay. Serum inflammatory markers were measured and pediatric CD disease activity index (PCDAI) scores calculated. The simple endoscopic score for CD (SES-CD) was reported for a subgroup who underwent ileocolonoscopy corresponding with the stool samples. Sixty-five children were recruited. Children in clinical remission had lower FC and CHI3L1 levels than those with active disease (FC: 277 vs. 1648 µg/g, p = 0.012; CHI3L1: 23 vs. 227 ng/g, p = 0.013). FC levels differed between patients with clinically active or inactive isolated ileal CD. Although FC and CHI3L1 levels correlated strongly (r = 0.83), none of the fecal markers correlated well with serum markers. Only FC and OPG correlated with SES-CD scores (r = 0.57 and r = 0.48, respectively). In conclusion, FC correlated with both endoscopic and clinical disease activity and was the only biomarker that differentiated between active and inactive ileal CD. CHI3L1 also predicted clinical disease activity and correlated highly with FC. Further investigation of the role of CHI3L1 is required.