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Frontotemporal lobar degeneration (FTLD) is the second most common early-onset dementia. Several studies demonstrated that neuroinflammation and iron accumulation occur in FTLD. However, the timing and relevance of these processes and whether these two are merely cause or consequence remains unclear. Elucidating the role is crucial to assess the rationale for using anti-inflammatory therapies in FTLD. Additionally, the process of glymphatic brain clearance has gained attention as a potential contributor in the disease pathophysiology.
In this multimodal biomarker study, we use a combination of ultra-high field (7T) MR, blood and cerebrospinal fluid (CSF) biomarkers to investigate the role of neuroinflammation, iron accumulation and brain clearance in FTLD, and to identify biomarkers to differentiate FTLD-TDP from FTLD-tau. We aim to include 25 patients with probable FTLD-tau, 25 with probable FTLD-TDP and 50 healthy individuals with 50% risk to develop FTLD. We will use several MRI techniques, including magnetic resonance spectroscopy, diffusion weighted spectroscopy and quantitative susceptibility mapping. In addition, we will assess the prevalence of perivascular spaces (PVS) and the mobility of CSF to address glymphatic brain clearance. We will compare quantitative MR markers between patients with FTLD-tau and FTLD-TDP, presymptomatic mutation carriers and healthy controls, and correlate these measures with clinical data and biomarkers in blood and CSF.
We obtained ethical approval from the Medical Ethics Committee Leiden Den Haag Delft (NL78272.058.21). The results will be disseminated through presentations at national and international conferences, open-access peer-reviewed publications, ClinicalTrials.gov and to the public through social media posts and annual newsletters.
This study explored the experience of stigma and access to healthcare by persons with long COVID from the majority Dutch and two ethnic minority populations (Turkish and Moroccan) living in the Netherlands.
This was a cross-sectional qualitative study that employed inductive and deductive thematic approaches to data analysis using MAXQDA.
Between October 2022 and January 2023, 23 semi-structured interviews were conducted with participants of Dutch, Moroccan and Turkish ethnic origins with long COVID living in the Netherlands. Participants were men and women aged 30 years and above.
Guided by the concepts of stigma and candidacy, the findings are structured according to the broader themes of stigma and access to care. The findings show that people with long COVID suffer self and public stigma resulting from the debilitating illness and symptoms. Especially among Turkish and Moroccan ethnic minority participants, strong filial obligations and gendered expectations of responsibility and support within their communities further worsen self-stigma. This experience of stigma persisted within healthcare where lack of information and appropriate care pathways led to feelings of frustration and abandonment, especially for participants with pre-existing health conditions which further complicate candidacy. Under the access to healthcare theme, the findings show multiple challenges in accessing healthcare for long COVID due to several multifaceted factors related to the various stages of candidacy which impacted access to care. Particularly for Turkish and Moroccan ethnic minority participants, additional challenges resulting from limited access to information, pre-existing structural challenges and experience of stereotyping based on ethnicity or assumed migrant identity by health professionals further complicate access to health information and long COVID care.
The findings call for urgent attention and research to identify and coordinate healthcare for long COVID. There is also a need for accessible, informative and tailored support systems to facilitate patients’ access to information and care pathways for long COVID. Providing tailored information and support, addressing the various barriers that hinder optimal operating conditions in healthcare and leveraging on social networks is crucial for addressing stigma and facilitating candidacy for persons with long COVID towards improving access to care.
To measure the outcome of the implementation of a multifaceted educational intervention on the impact of moral distress among critical care nurses.
The complex nature of critical care settings exaggerates different morally distressing situations that require ongoing development of interventions to mitigate the impact of moral distress. Despite the availability of research that has addressed moral distress among nurses in the literature, there is a debate about the effectiveness of the applied interventions in reducing moral distress.
A quasi-experimental pretest-posttest control group study design.
Critical care nurses in two public hospitals in the Emirate of Abu Dhabi, UAE enrolled in a study that extended over 6 months. Hospital A was assigned as an experimental group (n = 76) and received four educational sessions and three booster sessions. Hospital B was assigned as a control group (n = 82) and didn't receive any moral distress-related education. The Measure of Moral Distress for Health Care Professionals questionnaire and the Moral Distress Thermometer were utilised to measure the participants' moral distress frequency, intensity, and composite scores pre- and post-intervention and identify the outcomes.
The multifaceted educational intervention exhibited statistically significant reductions in the experimental group frequency, intensity, and composite moral distress scores post-test. Conversely, moral distress scores were increased among the control group. Moreover, the intervention significantly reduced the number of nurses who intended to leave their positions from 58 nurses to 47 nurses in the experimental group.
The multifaceted educational intervention exerts positive outcomes in reducing moral distress across all the dimensions and improving the nurses' retention.
The intervention provides materials that could enhance the nurses' moral knowledge and skills. It provides different tools, techniques, and strategies to help the nurses address and manage their moral distress.
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