Views from an international multiple sclerosis patient community on the future of their clinical care

Background: The COVID-19 pandemic led to changes in healthcare delivery for people living with multiple sclerosis (MSers), largely due to the rapid increase in the use of telemedicine. The learnings from this change may influence the future of MS care, providing an opportunity for MSers to shape the framework of clinical care. Goals: The goals of this research were to 1) gain lived experience insights to understand the impact of the pandemic on MSers' access to, and delivery of, clinical care about 18 months into the pandemic, and 2) understand MSers' experiences of telemedicine, including the adoption, feasibility, benefits, drawbacks, and preferences relative to their previous experience with in-person appointments. Method(s): An online volunteer survey (in English), available 27 August 2021 to 22 September 2021, was emailed or accessed through social media for adults (>=18) who self-reported an MS diagnosis. Result(s): 2,214 respondents answered at least the first question and 1,469 completed it. Most respondents lived in the UK (65%), were white (89%), female (77%), with diagnosis of relapsingremitting MS (66%). Despite the pandemic, 42% of respondents were dissatisfied with the level of contact with their MS neurologist. Attending in-person appointments with MS clinical team was challenging for 51%, primarily due to symptoms/disability. Over the past year, 74% of respondents had a telemedicine (telephone or video) appointment and 51% had in-person appointments. More than half (60%) considered telemedicine to be the same or better than in-person appointments, especially if via video. Various types of appointments were identified as 'acceptable' or 'unacceptable' for telemedicine. Although there were varying degrees of confidence with technology and use of telemedicine for remote care, the majority indicated recognition of the role of telemedicine in the future of MS clinical care and believe technology improves their lives. Conclusion(s): Best practice for implementing video appointments by MS healthcare teams should include recognition of the patient perspectives and managing their expectations around the limitations. Considerations should include MSers' different confidence levels in engaging in telemedicine, understanding of appointment types better suited for in-person vs video, and heterogeneity of MS, including greater symptom burden for MSers with progressive MS, potentially impacting their ability to travel to in-person appointments.

B Cells Fit for Germinal Center Activity Predict Response to a Third Dose of SARS-CoV-2 Vaccine in Solid Organ Transplant Recipients

Purpose: While SARS-CoV-2 vaccination has dramatically reduced COVID-19 severity in the general population, fully vaccinated solid organ transplant recipients (SOTRs) demonstrate reduced seroconversion and increased breakthrough infection rates. Furthermore, a third vaccine dose only increases antibody and T cell responses in a proportion of SOTRs. We sought to investigate the underlying mechanisms resulting in varied humoral responses in SOTRs. Method(s): Within a longitudinal prospective cohort of SOTRs, anti-spike IgG, total and spike-specific B cells were evaluated in 44 SOTR participants before and after a third vaccine dose using high dimensional flow cytometry to assess immunologic and metabolic phenotypes. B cell phenotypes were compared to those of 10 healthy controls who received a standard two-dose mRNA series. Result(s): Notably, even in the absence anti-spike antibody after two doses, spikespecific B cells were detectable in most SOTRs (76%). While 15% of participants were seropositive before the third dose, 72% were seropositive afterward. B cells, however, were differentially skewed towards non-class switched B cells in SOTRs as compared to healthy control B cells. Expansion of spike-specific class-switched B cells in SOTRs following a third vaccine dose correlated with increased classswitched (IgG) antibody titers. Antibody response to a third vaccine dose was associated with expanded populations of germinal center-like (CD10+CD27+) B cells, as well as CD11c+ alternative lineage B cells with specific upregulation of CPT1a, the rate limiting enzyme of fatty acid oxidation and a preferred energy source of germinal center B cells. Conclusion(s): This analysis defines a distinct B cell phenotype in SOTRs who respond to a third SARS-CoV-2 vaccine dose, specifically identifying fatty acid oxidation as pathway that could be targeted to improve vaccine response such as through targeted immunosuppressive modulation. (Figure Presented).

SARS-CO-V2 ANTIBODY STATUS IN CHILDREN WITH MITOCHONDRIAL DISEASE

Introduction: The impact of the COVID19 pandemic on pediatric neurodevelopmental disorders like mitochondrial disease (MtD) has not been well characterized. Viral infection is a major cause of morbidity in children with MtD. Historically, pediatric patients with MtD experience neurologic decline and metabolic decompensation if exposed to viral infection and families practice strict risk mitigation behavior to avoid infection. As many caregivers of children with MtD are essential workers, the household serves as a transmission risk factor. To better understand SARS-CoV-2 infection in children with MtD, we conducted a serologic study of MtD households. Methods: Families with a child with MtD were shipped a Neoteryx Blood Collection kit. Patient samples came from fifteen states across the United States as well as two European countries. All household individuals provided a dried blood sample which was shipped back for analysis of SARS-CoV-2 antibodies against both the nucleocapsid and the spike protein. Online questionnaires were also distributed to each family to assess exposure risks, MtD severity, and viral symptomatology. These data will allow us to define the status of proximate contacts of children with MtD, as well as symptomatology and asymptomatic infection. Results: Twenty families enrolled with N = 83 samples collected. All 20 families had at least one member with a positive nucleocapsid antibody test. Of the 21 patients with mitochondrial disease, 18 were positive for antibodies against the nucleocapsid antibody. However, of the 14 MtD patients who reported community testing prior to sampling, only one patient with MtD had known a positive test in the community. Of those with positive nucleocapsid antibodies, 29% had a known exposure to someone with COVID-19 infection. Symptomatology analysis concluded that between March of 2020 and the sampling date, 6 patients experienced fever or chills, 2 experienced a new or worsening cough, 1 experienced shortness of breath, 2 experienced pneumonia and 1 presented with muscle or body aches. Conclusion: There is serologic evidence that the majority of families affected by mitochondrial disease have been exposed to COVID19 despite strict risk mitigation behaviors. Of the patients exposed to COVID19, almost all had another family member also exposed, indicating the household as a possible transmission factor. None of these patients experienced hospitalization, neurologic decline, or metabolic decompensation. This implies that patients with mitochondrial disease may be capable of having asymptomatic COVID19 infections and may be able to tolerate this disease without acute decompensation. This may have implications about mitochondrial function in the immune response to COVID19. Future directions for this study include a network scale up model which will aid in making broader generalizations about this disease community through exposure levels.

PRE-PANDEMIC PREVALENCE AND CONTROL RATES OF HYPERTENSION IN THE USA: NHANES 2017-2020

Background The COVID pandemic has been a major disruptor of preventive health programs. We set out to establish the burden and control rates of hypertension(HTN) at the dawn of this pandemic, providing baseline reference measures for which the impact of the pandemic on HTN prevalence and control rates can be assessed in future. Methods HTN was classified as mean systolic blood pressure (mSBP) ≥130 mmHg or mean diastolic blood pressure (mDBP) ≥80 mmHg or self-reported current use of antihypertensive medications. Hypertensives on medications with mSBP <130 mmHg and mDBP <80 mmHg were considered as well-controlled. Chi-square test was used in subgroup comparisons of HTN prevalence and p-values <0.05 were considered statistically significant. Results The age-adjusted pre-pandemic prevalence of HTN in the US was 52.3% (50.2-54.3). The prevalence was significantly higher in men: 54.7% (51.6-57.8), Non Hispanic Blacks: 64.8%(62.8-66.9), obese: 62.8%(60.8-64.8) and persons aged ≥ 60years: 77.1%(74.3-79.8). The control rate of HTN was 44.2% (42.0-46.5). There was a statistically significant difference in the rate of control across socioeconomic and racial groups. Conclusion About 52% of individuals ≥20 years in the USA were hypertensives and less than half of them on medications were well-controlled. Significant discrepancies exist in the burden and control rates in different subpopulation categories. Our study calls for more screening for HTN during and especially post COVID pandemic. [Formula presented]

Preparing the post-pandemic workforce for the cruise and hospitality industry

Purpose The aim of this article is to examine some of the imperatives surrounding the preparation of the workforce for the cruise and hospitality industry after the COVID-19 pandemic. This includes a competency-based approach to training. Design/methodology/approach An analysis of peer-reviewed material was conducted. This involved looking at the literature on the cruise and hospitality industry in the Caribbean region and specifically, Jamaica. Attention was then given to how aspects of training in competency-based education/training (CBE/T) could be utilised to prepare the workforce to sustain a viable cruise and hospitality industry during and after the pandemic. Findings The pandemic reveals some of the weaknesses of global tourism and academia more generally in terms of curricula and has pointed out that most of the training methods, techniques, pedagogies and subject areas may change in times of crisis in order to better prepare for response and recovery policies, strategies and research. Some of the competencies that the post-pandemic cruise and hospitality workforce will require were identified in the review, such as technological, health management and resilience competencies. Practical implications The review implies that there are new and emerging competencies that are driven by the COVID-19 pandemic. These must be reflected in a competency-based education and training (CBET) curricula as educational change will be required to prepare the post-pandemic workforce. Social implications Relationships and results will need to be the focus of CBET for the cruise and hospitality industry. Although the customer focus will remain for industry workers, the workforce will need to learn to interact with tourists via touchless applications, simulations and virtual interactions. Originality/value This paper is of value to educators and trainers in the cruise and hospitality industry.

Mental health inequalities in disruptions across multiple domains during COVID -19: an investigation in 12 population-based longitudinal studies

Disruptions related to the COVID-19 pandemic and its associated virus suppression measures have affected many worldwide but those already suffering from psychological distress may have been especially vulnerable. We investigated associations between pre-pandemic psychological distress and disruptions to healthcare, economic activity, housing, and cumulative disruptions. Data were from 59,482 participants in 12 UK longitudinal adult population surveys with both pre-pandemic and COVID-19 surveys. Participants self-reported disruptions since the start of the pandemic to: healthcare (medication access, procedures, or appointments);economic activity (negative changes in employment, income or working hours);and housing (change of address or household composition). Logistic regression models were used to estimate associations between pre-pandemic standardised psychological distress scores and disruption outcomes. Findings were synthesised using a random effects meta-analysis with restricted maximum likelihood. Approximately one to two thirds of study participants experienced some form of disruption during the pandemic. One standard deviation higher pre-pandemic psychological distress was associated with: increased odds of any healthcare disruption (odds ratio: 1.30 [95% CI: 1.20-1.40];I2: 65%);increased odds of experiencing any economic disruption (1.11 [1.03-1.16];I2: 61%);no associations with housing disruptions;and increased likelihood of experiencing a disruption in at least two domains (1.25 [1.18-1.32];I2: 38%) or one domain (1.11 [1.07-1.16];I2: 32%) compared to no disruptions. Associations did not differ by sex, ethnicity, education, or age. Individuals suffering from psychological distress pre-pandemic may need additional support to manage stressful life disruptions. Considering mental ill-health was already unequally distributed in the UK population, this may exacerbate existing inequalities related to sex, ethnicity, education and age.

Risk communication in a double public health crisis: the case of Ebola and cholera in Ghana. (Special Issue: COVID-19.)

During 2014-2016 Ebola epidemic, many West African countries experienced perennial outbreaks of various infectious diseases. Given the geographic dynamics of disease outbreaks in the region, it seems obvious that research on risk communication needs to contemplate how these countries manage risk communication about simultaneously occurring infectious diseases. Yet, this is missing in risk communication scholarship. I draw on insights from the social amplification of risk framework to assess how three amplification stations responded to risk signals about proximate Ebola and cholera outbreaks in 2014 in Ghana. Based on in-depth interviews and focus group discussions with risk communicators, media workers, and community members, I argue that the differing individual and social experiences of Ebola and cholera in Ghana were shaped by historical, religious, socio-cultural, and institutional processing of risk signals, which guided judgements about risks. This study contributes to the literature on the social amplification of risk framework and risk and crisis communication by showing how the context of an impending crisis can lead to a health crisis for a preventable and treatable disease through the amplification and attenuation of risks signals. The study recommends the inclusion of lay people perspectives in the development of risk and crisis communication campaigns.

Adherence to COVID-19 risk stratificationduring the peak of pandemic: A District GeneralHospital experience

Background/AimsDuring the peak of COVID-19 pandemic, there were growingconcerns that rheumatology patients could have an increased risk ofcontracting coronavirus due to the immunosuppressive drugs that theywere taking. British Society for Rheumatology (BSR) recommended inits risk stratification guide in March 2020 that vulnerable patientsshould be either shielded or isolated according to their level of risk.The purpose of this survey is to evaluate the compliance to the riskstratification advice among rheumatology patients in a single centre.MethodsRisk stratification guidance was sent out to 401 patients recommending either to shield or to isolate. Patients were contacted over thetelephone between 14 September and 18 October 2020 to ensure theyhad received a postal letter with risk stratification advice. If received, itwas checked whether they had followed the guidance. Responsesreceived from all participants were analysed.Results93% (373) of patients confirmed that they had received the guidance;however, 8 patients suggested they hadn't received and we wereunable to contact 16 patients, despite trying multiple times. Fourpatients died but they did not have confirmed coronavirus. 267confirmed they were shielding and 83 were isolating, but 21 patientsdecided not to follow the guidance despite the recommendation andtwo patients stopped taking the drugs due to fear of contracting thecoronavirus. Total 258 females and 143 males with the mean age 59.Most common diagnoses were rheumatoid arthritis (227), psoriaticarthritis (97) and axial spondyloarthritis (59). It was noted that out of 7patients who had symptoms suggestive of COVID-19, only threepatients were confirmed to have COVID-19 positive PCR test. Threemost commonly used drugs were Benepali (128) followed by Amjevita(100), then Rituximab (56).ConclusionAlthough uptake of postal communication was high in this study, it wasdifficult to establish how rapidly the guidance was delivered. Werealise the need to employ better ways of communicating with thepatients. Innovative ways such as text messaging and social mediahave an important role in the delivery of a rapid mass communicationduring the pandemic. It was reassuring to note that only a very smallnumber of patients had COVID-19 among the patients who followedthe government advice to either shield or isolate. But, it would beinteresting to see whether the incidence of COVID-19 cases rise sincerheumatology patients are no longer shielding.

Telehealth and Autism Prior to and in the Age of COVID-19: A Systematic and Critical Review of the Last Decade.

There has been growing interest in the use of telehealth; however, the COVID-19 pandemic and the subsequent isolation and restrictions placed on in-person services have fast-tracked implementation needs for these services. Individuals with autism spectrum disorder (ASD) have been particularly affected due to the often-intensive service needs required by this population. As a result, the aim of this review was to examine the evidence base, methodology, and outcomes of studies that have used telehealth for assessment and/or intervention with children and adolescents with ASD as well as their families over the last decade. Further, the goal is to highlight the advances in telehealth and its use with this special population. A systematic search of the literature was undertaken, with 55 studies meeting inclusion criteria and quality analysis. Specified details were extracted from each article, including participant characteristics, technology, measures, methodology/study design, and clinical and implementation outcomes. Services provided via telehealth included diagnostic assessments, preference assessments, early intervention, applied behavior analysis (ABA), functional assessment and functional communication training, and parent training. Findings, although still emerging, encouragingly suggested that services via telehealth were equivalent or better to services face-to-face. Results support the benefits to using telehealth with individuals with ASD. Future research should continue to explore the feasibility of both assessments and interventions via telehealth with those having ASD to make access to assessment services and interventions more feasible for families, while acknowledging the digital divide it could create.