Body weight, behaviours of concern, and social contact in adults and adolescents with Prader-Willi syndrome in full-time care services: Findings from pooled international archival data.

BACKGROUND: Prader-Willi syndrome (PWS) is a complex genetic neurodevelopmental condition characterised by a range of debilitating and lifelong symptoms. The many physical and behavioural challenges that arise with adults with PWS often necessitate full-time (i.e., 24-hour) professional care support. However, despite the fact that many clinicians regard full-time PWS-specific care to represent best practice, relatively few studies have directly examined the benefits of such services. The purpose of this paper is to use archival data to investigate the impact of full-time care services on people with PWS, and to assemble a large statistical dataset on which robust analyses of improvements in weight, BMI, and behavioural outcomes can be based. METHODS: Information collated by the International PWS Organisation (IPWSO), an international non-profit membership organisation supporting national PWS associations around the world, was combined into a single anonymised dataset for statistical analysis. Data were supplied by service-providers from several countries who provide full-time support to people with PWS. The dataset included details on the specific services provided, basic demographic information on service recipients, including weight, body mass index (BMI), and observational records relating to behaviours of concern (BOC; consisting of temper outbursts, skin-picking, egocentrism, inflexibility, and striving for dominance). RESULTS: A total of 193 people with PWS (ranging in age from < 10 yrs to > 50 yrs; 93% of whom were > 18 yrs), residing in 11 services across 6 countries, were represented in the dataset. On average, people with PWS showed significant reductions in weight and BMI after joining a full-time care service, with improvements within one year of entering, which were cumulative over time and independent of age or initial weight at entry. Similar cumulative improvements over time were seen for BOC within one year and were unrelated to age or severity of BOC at entry. The degree to which services are specialised for residents with PWS appeared to confer particular benefits, with people living in PWS-exclusive services showing the greatest improvements in weight, BMI, and BOC. Reductions in BOC were associated with greater, rather than less, social contact, suggesting that these improvements were not achieved at the expense of broader freedoms, such as the opportunity to meet with families and friends. CONCLUSIONS: We conclude that full-time care services have a high likelihood of enhancing the lives of people with PWS within one year with long-lasting benefits, especially if those services are exclusive and specialised around the particular needs of PWS.

Automated solid phase DNA extraction on a lab-on-a-disc with two-degrees of freedom instrumentation.

BACKGROUND: Lab-on-a-disc (LoaD) technology has emerged as a transformative approach for point-of-care diagnostics and high-throughput testing. The promise of integrating multiple laboratory functions onto a single integrated platform has significant implications for healthcare, especially in resource-limited settings. However, one of the primary challenges faced in the design and manufacture of LoaD devices is the integration of effective valving mechanisms. These valves are essential for fluid control and routing, but their intricacy often leads to complexities in design and increased vulnerability to failure. This emphasizes the need for improved designs and manufacturing processes without complex, integrated valving mechanisms. (96) RESULTS: We describe a fully automated biological workflow and reagent actuation on a LoaD device without an integrated valving system. The Two Degrees-of-Freedom (2DoF) custom centrifuge alters the centre of rotation, facilitating fluid flow direction changes on the microfluidic platform through a custom programmed interface. A novel 360-degree fluid manipulation approach via secondary planetary gear motion enabled sequential assay reagent actuation without embedded valve triggering, with the addition of infinite incubation times and efficient use of platform realty. The simplified LoaD platform uses clever design, with intermediate flow chambers to avoid cross contamination between reagent steps. Notably, the optimized LoaD platform demonstrated a two-fold DNA yield at higher HEK-293 cell concentrations compared to commercially available spin-column kits. This significantly simplified LoaD platform successfully automated a common, complex workflow without inhibiting DNA purification. (129) SIGNIFICANCE: This system exhibits the clever coupling of both 2DoF and centrifugal microfluidics to create an autonomous testing package capable of eradicating the need for complex valving systems to automate biological workflows on LoaDs. This automated system has outperformed commercially available DNA extraction kits for higher cell counts. The platform's elimination of valve requirements ensures unlimited sample incubation times and enhances reliability, making it a straightforward option for automated biological workflows, particularly in diagnostics. (73).

Psychophysiological responses to psychological stress exposure and neural correlates in adults with mental disorders: a scoping review.

Introduction: The dysregulation of psychophysiological responses to mental stressors is a common issue addressed in individuals with psychiatric conditions, while brain circuit abnormalities are often associated with psychiatric conditions and their manifestations. However, to our knowledge, there is no systematic overview that would comprehensively synthesize the literature on psychophysiological responses during laboratory-induced psychosocial stressor and neural correlates in people with mental disorders. Thus, we aimed to systematically review the existing research on psychophysiological response during laboratory-induced stress and its relationship with neural correlates as measured by magnetic resonance imaging techniques in mental disorders. Methods: The systematic search was performed on PubMed/Medline, EBSCOhost/PsycArticles, Web of Science, and The Cochrane Library databases during November 2021 following the PRISMA guidelines. Risk of bias was evaluated by employing the checklists for cross-sectional and case-control studies from Joanna Briggs Institute (JBI) Reviewers Manual. Results: Out of 353 de-duplicated publications identified, six studies were included in this review. These studies were identified as representing two research themes: (1) brain anatomy and psychophysiological response to mental stress in individuals with mental disorders, and (2) brain activity and psychophysiological response to mental stress in individuals with mental disorders. Conclusions: Overall, the evidence from studies exploring the interplay between stress psychophysiology and neural correlates in mental disorders is limited and heterogeneous. Further studies are warranted to better understand the mechanisms of how psychophysiological stress markers interplay with neural correlates in manifestation and progression of psychiatric illnesses.

The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Myalgic encephalomyelitis/chronic fatigue (ME/CFS) is a post-infectious, chronic disease that can lead to severe impairment and, even, total disability. Although the disease has been known for a long time, and has been coded in the ICD since 1969 (G93.3), medical research has not yet been able to reach a consensus regarding its physiological basis and how best to treat it. Against the background of these shortcomings, psychosomatic disease models have been developed and psychotherapeutic treatments have been derived from them, but their empirical testing has led to sobering results. According to the current state of research, psychotherapy and psychosomatic rehabilitation have no curative effect in the treatment of ME/CFS. Nevertheless, we see numerous patients in practices and outpatient clinics who suffer severely as a result of their illness and whose mental well-being and coping strategies would benefit from psychotherapeutic help. In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.

Cortisol response to psychosocial stress, mental distress, fatigue and quality of life in coronary artery disease patients.

We aimed to explore the relationship between cortisol response to psychosocial stress, mental distress, fatigue and health related quality of life (HRQoL) in individuals with coronary artery disease (CAD) after recent acute coronary syndrome (ACS). A cross-sectional study initially included 113 subjects (88% men, 53 ± 7 years) 1-3 weeks after ACS. Cortisol response was assessed by measuring salivary cortisol during Trier Social Stress Test. Mental distress was measured with Hospital Anxiety and Depression Scale, State-Trait Anxiety Inventory, and Type D Scale-14. Fatigue symptoms were evaluated using Multidimensional Fatigue Inventory 20-items, while HRQoL was assessed with 36-Item Short Form Medical Outcome Questionnaire. After conducting multivariable linear regression analyses, diminished cortisol response sampled after Public speech (T3-T1, + 15 min) was significantly associated with higher anxiety symptoms (ß = -0.224; p = 0.035), while diminished cortisol response sampled after preparation time (T2-T1, + 10 min) was significantly linked with the presence of Type D personality (ß = -0.290; p = 0.006; ß = -0.282; p = 0.008 respectively), even after controlling for confounders (i.e., sex, age, education, New York Heart Association functional class, beta-blockers and baseline levels of cortisol measures). We found that mental distress, but not fatigue and HRQoL, was linked with blunted cortisol response during anticipation time of psychosocial stress, independently of potential covariates.

Patients' spiritual concerns and needs and how to address them during advance care planning conversations: Healthcare chaplains' perspectives.

OBJECTIVES: Advance care planning (ACP) conversations require the consideration of deeply held personal values and beliefs and the discussion of uncertainty, fears, and hopes related to current and future personal healthcare. However, empirical data are limited on how such spiritual concerns and needs are supported during ACP. This study explored board-certified healthcare chaplains' perspectives of patients' spiritual needs and support in ACP conversations. METHODS: An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey included 3 open-ended questions about patients' hopes and fears and about how the chaplains addressed them during ACP conversations. Written qualitative responses provided by 244 of the chaplains were examined with content analysis. RESULTS: The majority of the 244 chaplains were White (83.6%), female (59%), Protestant (63.1%), and designated to one or more special care units (89.8%). Major themes on patients' hopes and fears expressed during ACP were (1) spiritual, religious, and existential questions; (2) suffering, peace, and comfort; (3) focus on the present; (4) hopes and fears for family; and (5) doubt and distrust. Major themes on how chaplains addressed them were (1) active listening to explore and normalize fears, worries, and doubts; (2) conversations to integrate faith, values, and preferences into ACP; and (3) education, empowerment, and advocacy. SIGNIFICANCE OF RESULTS: ACP conversations require deep listening and engagement to address patients' spiritual needs and concerns - an essential dimension of engaging in whole-person care - and should be delivered with an interdisciplinary approach to fulfill the intended purpose of ACP.

Smokers show an altered hemodynamic profile to active stress: Evidence of a dysregulated stress response in young adults.

Tobacco smoking has been associated with lower cardiovascular reactivity to psychological stress in middle-aged samples, but its impact on cardiovascular reactivity to stress in young adults remains unclear. The present study examined whether young healthy adults showed differing cardiovascular stress reaction profiles depending on their smoking status. Across two laboratory studies (N = 64 and N = 114), we asked participants to complete cognitive stress-tasks while undergoing continuous hemodynamic monitoring. In both studies, there was not a statistically signification association between systolic blood pressure, diastolic blood pressure, or heart rate reactivity to stress (all ps > .05). However, examination of the underlying hemodynamic profile of the stress response suggested differences between non-smokers and smokers in both studies. In Study 1, non-smokers exhibited the expected myocardial response to the active stress-task; however, smokers exhibited a mixed hemodynamic profile. In Study 2, smokers evidenced a weaker myocardial profile to the active stress-tasks compared to non-smokers. However, the examination of the continuous hemodynamic profile score (HP) did not identify statistical differences. These results highlight that any level of the smoking habit is associated with an altered hemodynamic profile in response to stress in smokers, which may have important implications for long-term cardiovascular health. The findings also suggest that controlling for smoking behavior in reactivity research examining blood pressure and heart rate responses to stress in young adults is not necessary.

Testing the Efficacy of Attitudinal Inoculation Videos to Enhance COVID-19 Vaccine Acceptance: Quasi-Experimental Intervention Trial.

BACKGROUND: Over the course of the COVID-19 pandemic, a variety of COVID-19-related misinformation has spread and been amplified online. The spread of misinformation can influence COVID-19 beliefs and protective actions, including vaccine hesitancy. Belief in vaccine misinformation is associated with lower vaccination rates and higher vaccine resistance. Attitudinal inoculation is a preventative approach to combating misinformation and disinformation, which leverages the power of narrative, rhetoric, values, and emotion. OBJECTIVE: This study seeks to test inoculation messages in the form of short video messages to promote resistance against persuasion by COVID-19 vaccine misinformation. METHODS: We designed a series of 30-second inoculation videos and conducted a quasi-experimental study to test the use of attitudinal inoculation in a population of individuals who were unvaccinated (N=1991). The 3 intervention videos were distinguished by their script design, with intervention video 1 focusing on narrative/rhetorical ("Narrative") presentation of information, intervention video 2 focusing on delivering a fact-based information ("Fact"), and intervention video 3 using a hybrid design ("Hybrid"). Analysis of covariance (ANCOVA) models were used to compare the main effect of the intervention on the 3 outcome variables: ability to recognize misinformation tactics ("Recognize"), willingness to share misinformation ("Share"), and willingness to take the COVID-19 vaccine ("Willingness"). RESULTS: There were significant effects across all 3 outcome variables comparing inoculation intervention groups to controls. For the Recognize outcome, the ability to recognize rhetorical strategies, there was a significant intervention group effect (P<.001). For the Share outcome, support for sharing the mis- and disinformation, the intervention group main effect was statistically significant (P=.02). For the Willingness outcome, there was a significant intervention group effect; intervention groups were more willing to get the COVID-19 vaccine compared to controls (P=.01). CONCLUSIONS: Across all intervention groups, inoculated individuals showed greater resistance to misinformation than their noninoculated counterparts. Relative to those who were not inoculated, inoculated participants showed significantly greater ability to recognize and identify rhetorical strategies used in misinformation, were less likely to share false information, and had greater willingness to get the COVID-19 vaccine. Attitudinal inoculation delivered through short video messages should be tested in public health messaging campaigns to counter mis- and disinformation.

An Interprofessional Approach to Advance Care Planning.

CONTEXT: Advance care planning (ACP) can improve patients' outcomes at end of life, and interprofessional collaboration has been recommended to facilitate ACP. However, role confusion in ACP facilitation among team members from different disciplines exists, and health professional disciplines' expectations for interprofessional collaboration in ACP are unclear. OBJECTIVE: To review expectations of major health professional organizations for ACP competencies, in order to identify gaps and opportunities for promoting interprofessional collaboration in ACP facilitation. METHODS: Guidelines and recommendations for ACP across disciplines including chaplaincy, medicine, nursing, psychology, and social work were identified and analyzed using content analysis. Main themes were then reviewed against national consensus statements on 4 ACP outcomes (process outcomes, action outcomes, quality of care outcomes, and healthcare outcomes) and mapped into existing domains for interprofessional education competency: values/ethics, roles/responsibilities, interprofessional communication, and teams and teamwork. RESULTS: Three major content themes were identified: professional commitment to advocating for patients' values and self-determination, professional responsibility to facilitate ACP, and specific tasks in ACP. These themes addressed mostly process and action outcomes of ACP but not quality of care outcomes or healthcare outcomes. Few disciplines included interprofessional collaboration as part of ACP competency. CONCLUSION: There is a need for standardized competency guidelines for interprofessional collaboration in ACP as an important first step in reducing confusion among roles and other challenges in facilitating ACP. Further efforts in practice, research, and policy are needed to facilitate interprofessional ACP, achieve competencies, and improve patients' outcomes.

Chaplaincy in the outpatient setting-getting from here to there.

One of the most evident trends in US health care and health care generally in the developed world is that more and more care is shifting to outpatient settings. This change opens up substantial opportunities, and in many cases, expectations for chaplains to extend the breadth of the care they provide in any health system. However, it also brings many challenges. This paper describes the journey of four very different inpatient chaplaincy services into the outpatient setting. These four examples focus on settings that would historically be thought of as outpatient-those that see patients within the brick and mortar of the health system.

Response to Adamson et al. (2020): 'Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: Outcomes from a specialist clinic in the UK'.

In a paper published in the Journal of the Royal Society of Medicine, Adamson et al. (2020) interpret data as showing that cognitive behavioural therapy leads to improvement in patients with chronic fatigue syndrome and chronic fatigue. Their research is undermined by several methodological limitations, including: (a) sampling ambiguity; (b) weak measurement; (c) survivor bias; (d) missing data and (e) lack of a control group. Unacknowledged sample attrition renders statements in the published Abstract misleading with regard to points of fact. That the paper was approved by peer reviewers and editors illustrates how non-rigorous editorial processes contribute to systematic publication bias.

Perspectives of board-certified healthcare chaplains on challenges and adaptations in delivery of spiritual care in the COVID-19 era: Findings from an online survey.

BACKGROUND: The COVID-19 pandemic has posed significant challenges for healthcare systems to meet patients' and families' complex care needs, including spiritual care needs. Little data are available about spiritual care delivery in light of the pandemic. AIM: This study examined the impact of COVID-19 on spiritual care by healthcare chaplains in the United States. DESIGN: An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey, designed to identify chaplains' roles in facilitating conversations about goals of care, included an open-ended question asking how COVID-19 affected chaplaincy practices; 236 chaplains responded. Quantitative data and written qualitative responses were analyzed using descriptive analysis and content analysis, respectively. SETTING/PARTICIPANTS: Majority of participants were white (88%), female (59%), Protestant (53%), and employed full time (86%). Almost half were working in community hospitals (45%) and designated to one or more special units (48%) including ICU, palliative care, and oncology. RESULTS: Three major themes emerged from chaplains' qualitative responses: (1) COVID-19-related risk mitigation and operational changes; (2) impact of social distancing guidelines; and (3) increased need for and provision of psychosocial and spiritual support. CONCLUSIONS: Chaplains reported that COVID-19 challenges contributed to greater social isolation, and mental health concerns for patients, families, and healthcare staff, and substantially changed the way healthcare chaplains provided spiritual care. With evolving healthcare contexts, developing safer, more creative modes of spiritual care delivery while offering systematic support for chaplains can help meet the increasing psychosocial and spiritual needs of patients, families, and healthcare team members.

Cultural Variance in Reception and Interpretation of Social Media COVID-19 Disinformation in French-Speaking Regions.

Digital communication technology has created a world in which media are capable of crossing national boundaries as never before. As a result, language is increasingly the salient category determining individuals' media consumption. Today, a single social media post can travel around the world, reaching anyone who speaks its language. This poses significant challenges to combatting the spread of disinformation, as an ever-growing pool of disinformation purveyors reach audiences larger than ever before. This dynamic is complicated, however, by the diversity of audience interpretations of message content within a particular language group. Both across and within national boundaries, a single message may be subject to a variety of interpretations depending on the cultural experiences and identities of its recipients. This study explores that dynamic through analysis of French language anti-vaccine and COVID-denialist disinformation. Using qualitative coding methodology, a team of researchers empirically identify common and far-reaching patterns of Francophone COVID disinformation narratives and rhetoric. These narratives and rhetorics are then subjected to hermeneutic close reading to determine likely variations in their reception across different French-speaking cultures. Data were gathered and analyzed between the dates of 24 March 2021 and 27 April 2021. Results of this study indicate the need for awareness on the part of public health officials combatting COVID disinformation online, for both the transnational reach of disinformation targeting speakers of a single language and for variations in meaning and salience across cultures within that language group.

Fatigue Is Associated With Diminished Cardiovascular Response to Anticipatory Stress in Patients With Coronary Artery Disease.

BACKGROUND: Fatigue and psychophysiological reactions to mental stress are known to be problematic in coronary artery disease (CAD) patients. Currently, studies exploring the relationship between fatigue and cardiovascular reactivity to stress are scarce and inconsistent. The current study aimed to investigate the links between cardiovascular response to mental stress and fatigue in CAD patients after acute coronary syndrome (ACS). METHODS: The cross-sectional study investigated 142 CAD patients (85% males, 52 ± 8 years) within 2-3 weeks after recent myocardial infarction or unstable angina pectoris. Fatigue symptoms were measured using Multidimensional Fatigue Inventory 20-items, while cardiovascular reactivity to stress [i.e., systolic (S) and diastolic (D) blood pressure (ΔBP), and heart rate (ΔHR)] was evaluated during Trier Social Stress Test (TSST). In addition, participants completed psychometric measures, including the Hospital Anxiety and Depression scale and the Type D Scale-14. Multivariable linear regression analyses were completed to evaluate associations between fatigue and cardiovascular response to TSST, while controlling for confounders. RESULTS: After controlling for baseline levels of cardiovascular measures, age, gender, education, heart failure severity, arterial hypertension, smoking history, use of nitrates, anxiety and depressive symptoms, Type D Personality, perceived task difficulty, and perceived task efforts, cardiovascular reactivity to anticipatory stress was inversely associated with both global fatigue (ΔHR: ß = -0.238; p = 0.04) and mental fatigue (ΔSBP: ß = -0.244; p = 0.04; ΔHR ß = -0.303; p = 0.01) as well as total fatigue (ΔSBP: ß = -0.331; p = 0.01; ΔHR: ß = -0.324; p = 0.01). CONCLUSION: In CAD patients after ACS, fatigue was linked with diminished cardiovascular function during anticipation of a mental stress challenge, even after inclusion of possible confounders. Further similar studies exploring other psychophysiological stress responses are warranted.