National plans and awareness campaigns as priorities for achieving global brain health.

Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031 (IGAP). 18 months after this plan was adopted, global neurology stakeholders, including representatives of the OneNeurology Partnership (a consortium uniting global neurology organisations), take stock and advocate for urgent acceleration of IGAP implementation. Drawing on lessons from relevant global health contexts, this Health Policy identifies two priority IGAP targets to expedite national delivery of the entire 10-year plan: namely, to update national policies and plans, and to create awareness campaigns and advocacy programmes for neurological conditions and brain health. To ensure rapid attainment of the identified priority targets, six strategic drivers are proposed: universal community awareness, integrated neurology approaches, intersectoral governance, regionally coordinated IGAP domestication, lived experience-informed policy making, and neurological mainstreaming (advocating to embed brain health into broader policy agendas). Contextualised with globally emerging IGAP-directed efforts and key considerations for intersectoral policy design, this novel framework provides actionable recommendations for policy makers and IGAP implementation partners. Timely, synergistic pursuit of the six drivers might aid WHO member states in cultivating public awareness and policy structures required for successful intersectoral roll-out of IGAP by 2031, paving the way towards brain health for all.

Ethical and legal considerations in social media research for health technology assessment: conclusions from a scoping review.

OBJECTIVES: The objective was to identify and describe the published guidance and current academic discourse of ethical issues and standards related to the use of Social Media Research for generating patient insights for the use by health technology assessment (HTA) or health policy decisions. METHODS: A scoping review of the literature was conducted in PubMed and Embase and identified 935 potential references published between January 2017 and June 2021. After title and abstract screening by three reviewers, 40 publications were included, the relevant information was extracted and data were collected in a mind map, which was then used to structure the output of the review. RESULTS: Social Media Research may reveal new insights of relevance to HTA or health policies into patient needs, patient experiences, or patient behaviors. However, the research approaches, methods, data use, interpretation, and communication may expose those who post the data in social media channels to risks and potential harms relating to privacy, anonymity/confidentiality, authenticity, context, and rapidly changing technologies. CONCLUSIONS: An actively engaged approach to ensuring ethical innocuousness is recommended that carefully follows best practices throughout planning, conduct, and communication of the research. Throughout the process and as a follow-up, there should be a discourse with the ethical experts to maximally protect the current and future users of social media, to support their trust in the research, and to advance the knowledge in parallel to the advancement of the media themselves, the technologies, and the research tools.

Using social media research in health technology assessment: stakeholder perspectives and scoping review.

OBJECTIVES: The aim of this initiative was to examine collaboratively, in a multi-stakeholder team (health technology assessment (HTA) practitioners with patient involvement expertise, health technology industry, patient advocates, health policy experts, patient engagement experts), whether evidence generated through social media research (SMR) fills current information gaps relating to insights on specific aspects of patient experiences, preferences, or patient needs and delivers additional value to HTA. METHODS: The framing of the project was done in a co-creative, deliberative multi-stakeholder process. Challenge and refinement happened through discussions with 25 independent stakeholders from HTA bodies, industry, academia, and patient advocacy. For critical themes identified during the framing phase, scoping literature reviews were performed including the state of methods and examples for the use of SMR in HTA. RESULTS: The framing and stakeholder discussions specified a set of expectations and requirements, and the scoping reviews revealed the current state of methods and usage of SMR in health-policy decision making. CONCLUSIONS: The project concluded that SMR can contribute new, relevant evidence to HTA. It is however recommended to evolve the science through defining best practices when planning, conducting, and using SMR and to conduct multi-stakeholder pilot SMR projects to address questions relevant to current HTAs and to validate and improve the proposed practices.

Lessons learned from people with neurological diseases at the time of COVID-19: The EFNA-EAN survey.

BACKGROUND AND PURPOSE: The European Federation of Neurological Associations (EFNA), in partnership with the NeuroCOVID-19 taskforce of the European Academy of Neurology (EAN), has investigated the impact of the first wave of the COVID-19 pandemic on individuals with neurological diseases, as well as the hopes and fears of these patients about the post-pandemic phase. METHODS: An EFNA-EAN survey was available online to any person living with a neurological disorder in Europe. It consisted of 18 items concerning the impact of the first wave of the COVID-19 pandemic on the medical care of people with neurological disorders, and the hopes and fears of these individuals regarding the post-pandemic phase. RESULTS: For 44.4% of the 443 survey participants, the overall care of their neurological disease during the pandemic was inappropriate. This perception was mainly due to significant delays in accessing medical care (25.7%), insufficiently reliable information received about the potential impact of COVID-19 on their neurological disease (49.6%), and a substantial lack of involvement in their disease management decisions (54.3%). Participants indicated that their major concerns for the post-pandemic phase were experiencing longer waiting times to see a specialist (24.1%), suffering from social isolation and deteriorating mental well-being (23.1%), and facing delays in clinical trials with disinvestment in neuroscience research (13.1%). CONCLUSIONS: Despite the great efforts of health services to cope with the first wave of the COVID-19 pandemic, individuals with neurological conditions feel they have been left behind. These findings provide invaluable insights for improving the care of patients with neurological disorders in the further course of the COVID-19 pandemic.

Global survey on disruption and mitigation of neurological services during COVID-19: the perspective of global international neurological patients and scientific associations.

BACKGROUND: The COVID-19 pandemic outbreak has dramatically disrupted healthcare systems. Two rapid WHO pulse surveys studied disruptions in mental health services, but did not particularly focus on neurology. Here, a global survey was conducted and addresses the impact of the pandemic on neurology services. METHODS: A cross-sectional study was carried out in which 34 international neurological associations were asked to distribute the survey to national associations. The responses represented the national situation, in November-December 2020, with regard to the main disrupted neurological services, reasons and the mitigation strategies implemented as well as the disruption on training of residents and on neurological research. A comparison with the situation in February-April 2020, first pandemic wave, was also requested. FINDINGS: 54 completed surveys came from 43 countries covering all the 6 WHO regions. Overall, neurological services disruption was reported as mild by 26%, moderate by 30%, complete by 13% of associations. The most affected services were cross-sectoral neurological services (57%) and neurorehabilitation (56%). The second wave of the pandemic, however, was associated with the improvement of service provision for diagnostics services (44%) and for neurorehabilitation (41%). Governmental directives were the major cause of services' disruption (56%). Mitigation strategies were mostly established through telemedicine (48%). Almost half of respondents reported a significant impact on neurological research (48%) and educational activities (60%). Most associations (67%) were not involved in decision making for neurological patients' issues by their national government. INTERPRETATION: The COVID-19 pandemic affects neurological services and raises the universal need for the development of neurological health care at the policy, systems and services levels. A global national plan on mitigation strategies for disruption of neurological services during pandemic situations should be established and neurological scientific and patients associations should get involved in decision making.

DNA and modified vaccinia Ankara prime-boost vaccination generates strong CD8+ T cell responses against minor histocompatibility antigen HA-1.

Allogeneic immune responses underlie the graft-versus-leukaemia effect of stem cell transplantation, but disease relapse occurs in many patients. Minor histocompatibility antigen (mHAg) peptides mediate alloreactive T cell responses and induce graft-versus-leukaemia responses when expressed on patient haematopoietic tissue. We vaccinated nine HA-1-negative donors against HA-1 with a 'prime-boost' protocol of either two or three DNA 'priming' vaccinations prior to 'boost' with modified vaccinia Ankara (MVA). HA-1-specific CD8+ T cell responses were observed in seven donors with magnitude up to 1·5% of total CD8+ T cell repertoire. HA-1-specific responses peaked two weeks post-MVA challenge and were measurable in most donors after 12 months. HA-1-specific T cells demonstrated strong cytotoxic activity and lysed target cells with endogenous HA-1 protein expression. The pattern of T cell receptor (TCR) usage by HA-1-specific T cells revealed strong conservation of T cell receptor beta variable 7-9 (TRBV7-9) usage between donors. These findings describe one of the strongest primary peptide-specific CD8+ T cell responses yet recorded to a DNA-MVA prime-boost regimen and this may reflect the strong immunogenicity of mHAg peptides. Prime-boost vaccination in donors or patients may prove of substantial benefit in boosting graft-versus-leukaemia responses.

Digital Health Tools for Managing Noncommunicable Diseases During and After the COVID-19 Pandemic: Perspectives of Patients and Caregivers.

BACKGROUND: A reduction in the number of face-to-face medical examinations conducted for patients with noncommunicable diseases (NCDs) during the first wave of the COVID-19 pandemic has led to health care professionals quickly adopting different strategies to communicate with and monitor their patients. Such strategies include the increased use of digital health tools. However, patient preferences, privacy concerns, a lack of regulations, overregulation, and insufficient evidence on the efficacy of digital health tools may have hampered the potential positive benefits of using such tools to manage NCDs. OBJECTIVE: This viewpoint aims to discuss the views of an advisory board of patient and caregiver association members. Specifically, we aim to present this advisory board's view on the role of digital health tools in managing patients with NCDs during and after the COVID-19 pandemic, and to identify future directions based on patients' perspectives. METHODS: As an initiative under the NCD Partnership (PARTners in Ncds Engage foR building Strategies to improve Healthy ageing In Patients) model of Upjohn, a web-based advisory board of patient and caregiver advocates was held on July 28, 2020, to bring together key stakeholders from public and private sectors. RESULTS: The following key themes emerged: (1) technology developers should understand that the goals of patients may differ from those of health care professionals and other stakeholders; (2) patients, health care professionals, caregivers, and other end users need to be involved in the development of digital health tools at the earliest phase possible, to guarantee usability, efficacy, and adoption; (3) digital health tools must be better tailored to people with complex conditions, such as multimorbidity, older age, and cognitive or sensory impairment; and (4) some patients do not want or are unable to use digital health care tools, so adequate alternatives should always be available. CONCLUSIONS: There was consensus that public-private partnership models, such as the Upjohn NCD Partnership, can be effective models that foster innovation by integrating multiple perspectives (eg, patients' perspectives) into the design, development, and implementation of digital and nondigital health tools, with the main overall objective of improving the life of patients with NCDs.

Relationships Among Factors Related to Childbirth and Breastfeeding Outcomes in Primiparous Women.

OBJECTIVES: To explore the relationships among potentially modifiable factors related to childbirth and effective breastfeeding initiation at approximately 36 hours after birth and duration and exclusivity at hospital discharge, 2 weeks, 2 months, and 6 months after birth in primiparous women and to explore whether modifiable and nonmodifiable secondary factors and covariates influenced the relationships among factors related to childbirth and these breastfeeding outcomes. DESIGN: A prospective, longitudinal, cohort study. SETTING: The postpartum units of two general hospitals in eastern Canada. PARTICIPANTS: Ninety-seven mother-infant dyads. METHODS: We recorded demographic, childbirth, obstetric history, and breastfeeding data through chart review. A breastfeeding observation was completed at approximately 36 hours after birth by unit nurses. Participants maintained breastfeeding logs in hospital and for 6 months after birth and completed three self-report questionnaires before discharge. We analyzed outcomes using backward stepwise linear and logistic regression. RESULTS: One childbirth factor, labor induced with oxytocin, was negatively associated with effective initiation of breastfeeding, and none was related to breastfeeding duration and exclusivity at any time point. Maternal weight; professional support; and newborn's gestational age at birth, 5-minute Apgar score, weight loss, LATCH score, and active feeds (newborn actively suckled at the breast) were significantly associated with breastfeeding outcomes. CONCLUSION: Induction of labor with oxytocin should be used judiciously; when used, nurses must be hypervigilant to assess the mother-infant dyad for breastfeeding issues and to intervene to prevent or remediate them.

Nutrient Composition of Popularly Consumed African and Caribbean Foods in The UK.

(1) Background: Traditional foods are important in the diets of Black Africans and Caribbeans and, more widely, influence UK food culture. However, little is known about the nutritional status of these ethnic groups and the nutrient composition of their traditional foods. The aim was to identify and analyse African and Caribbean dishes, snacks and beverages popularly consumed in the UK for energy, macronutrients and micronutrients. (2) Methods: Various approaches including focus group discussions and 24-h dietary recalls were used to identify traditional dishes, snacks, and beverages. Defined criteria were used to prioritise and prepare 33 composite samples for nutrient analysis in a UK accredited laboratory. Quality assurance procedures and data verification were undertaken to ensure inclusion in the UK nutrient database. (3) Results: Energy content ranged from 60 kcal in Malta drink to 619 kcal in the shito sauce. Sucrose levels did not exceed the UK recommendation for adults and children. Most of the dishes contained negligible levels of trans fatty acid. The most abundant minerals were Na, K, Ca, Cu, Mn and Se whereas Mg, P, Fe and Zn were present in small amounts. (4) Conclusion: There was wide variation in the energy, macro- and micronutrients composition of the foods analysed.

My Migraine Voice survey: a global study of disease burden among individuals with migraine for whom preventive treatments have failed.

BACKGROUND: Migraine is associated with many debilitating symptoms that affect daily functioning. My Migraine Voice is a large global cross-sectional study aimed at understanding the full burden and impact of migraine directly from patients suffering from ≥4 monthly migraine days (MMDs) with a history of prophylactic treatment failure. METHODS: This study was conducted worldwide (31 countries across North and South Americas, Europe, the Middle East and Northern Africa, and the Asia-Pacific region) using an online survey administered to adults with migraine who reported ≥4 MMDs in the 3 months preceding survey administration, with pre-specified criteria of 90% having used preventive migraine treatment (80% with history of ≥1 treatment failure). Prophylactic treatment failure was defined as a reported change in preventive medication by individuals with migraine for any reason, at least once. RESULTS: In total, 11,266 individuals participated in the survey. Seventy-four percent of the participants reported spending time in darkness/isolation due to migraine (average: 19 h/month). While 85% of all respondents reported negative aspects of living with migraine (feeling helpless, depressed, not understood), sleeping difficulties (83%), and fear of the next attack (55%), 57% shared ≥1 positive aspect (learning to cope, becoming a stronger person). Forty-nine percent reported feeling limited in daily activities throughout all migraine phases. Migraine impact on professional, private, or social domains was reported by 87% of respondents (51% in all domains). In the previous 12 months, 38% of respondents had visited the emergency department (average: 3.3 visits), whereas 23% stayed in hospital overnight (average: 3.2 nights) due to migraine. CONCLUSIONS: The burden of migraine is substantial among this cohort of individuals with at least 4 migraine days per month and for whom at least 1 preventive migraine treatment had failed. Interestingly, respondents reported some positive aspects in their migraine journey; the greater resilience and strength brought on by coping with migraine suggests that if future treatments could address existing unmet needs, these individuals with migraine will be able to maximize their contribution to society.

Incidence of prenatal alcohol exposure in Prince Edward Island: a population-based descriptive study.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is a leading preventable cause of neurodevelopmental disability in North America. The stigma associated with alcohol use and abuse during pregnancy makes it difficult to obtain information on prenatal alcohol use through self-reporting. We assessed the incidence of prenatal alcohol exposure in Prince Edward Island to facilitate future public health initiatives addressing FASD. METHODS: Prenatal alcohol exposure was examined via population-based collection of meconium and analysis of fatty acid ethyl esters (FAEEs). Fatty acid ethyl esters are nonoxidative metabolites of ethanol that are produced in the fetus. Meconium FAEE concentrations of 2.0 nmol/g or greater are indicative of frequent prenatal alcohol exposure during the last 2 trimesters of pregnancy. Samples were collected from 1307 neonates between Nov. 8, 2010, and Nov. 8, 2011, in hospitals in PEI, or from those born to mothers who resided in PEI but gave birth in Halifax, Nova Scotia. Samples were frozen and shipped for analysis. Fatty acid ethyl esters were analyzed by gas chromatography-mass spectrometry and quantified by means of deuterated internal standards. RESULTS: Of the 1307 samples collected, 1271 samples were successfully analyzed. Positive results for FAEEs were obtained in 3.1% (n = 39) of samples collected within the first 24 hours after birth. INTERPRETATION: Not all neonates exposed to heavy prenatal alcohol in utero will exhibit FASD; based on current estimates of predictive value for disease by exposure, our findings suggest that 1.3% of neonates born in PEI during this 1-year period will have FASD. In its application to an entire provincial birth cohort, this study successfully implemented a public health-centred approach for evaluating population-based risk of FASD, with implications for practice across Canada.

Tub bathing versus traditional sponge bathing for the newborn.

OBJECTIVE: To compare selected effects of tub bathing versus traditional sponge bathing in healthy, term newborns and their mothers' ratings of pleasure and confidence with the bath. DESIGN: Randomized controlled study. SETTING: The maternity unit of an eastern Canadian hospital. PARTICIPANTS: One hundred two mother-baby pairs were randomly assigned to an experimental tub bath or a sponge bath control group. INTERVENTIONS: Fifty-one newborns were tub bathed and 51 sponge bathed according to the study protocols for their initial and one additional bath. MAIN OUTCOME MEASURES: (a) Newborn temperature stability was assessed by recording axillary temperatures pre- and postbath, (b) umbilical cord healing was identified by daily observations and infection control surveillance, (c) infant contentment was quantified by applying the Brazelton Neonatal Behavioral Assessment Scale, and (d) maternal pleasure with the bath and confidence with bathing at discharge were self-rated on a 5-point scale. RESULTS: Tub-bathed babies experienced significantly less temperature loss (t = 4.79, p = .00) and were significantly more content (t = -6.48, p = .00) than were those who were sponge bathed. No differences in cord healing scores were found. Mothers of tub bathed babies rated their pleasure with the bath significantly higher than did mothers of sponge bathed babies (t = 4.15, p = .00). No differences in maternal confidence were noted. CONCLUSIONS: Tub bathing is a safe and pleasurable alternative to sponge bathing in healthy, term newborns.

Abrasion resistance of medical glove materials.

Due to the increasing demand for nonlatex medical gloves in the health-care community, there is a need to assess the durability of alternative glove materials. This study examines durability characteristics of various glove materials by abrasion resistance testing. Natural rubber latex (latex), polyvinyl chloride (vinyl), acrylonitrile butadiene (nitrile), polychloroprene (neoprene), and a styrene-ethylene/butylene-styrene block copolymer (SEBS) were tested. All test specimens, with the exception of the vinyl, were obtained from surgical gloves. Unaged out-of-the-box specimens as well as those subjected to various degrees of artificial aging were included in the study. After the abrasion sequence, the barrier integrity of the material was assessed through the use of a static leak test. Other traditional tests performed on these materials were viral penetration to validate the abrasion data and tear testing for comparative purposes. The results indicate that specific glove-material performance is dependent upon the particular test under consideration. Most notably, abrasion, even in controlled nonsevere conditions, may compromise to varying degrees the barrier integrity of latex, vinyl, SEBS, nitrile, and neoprene glove materials. However, as evidenced by the results of testing three brands of neoprene gloves, the abrasion resistance of any one glove material may be significantly affected by variations in production processes.

Biaxial flex-fatigue and viral penetration of natural rubber latex gloves before and after artificial aging.

Barrier integrity of unaged and oven-aged (at 70 degrees C) natural rubber latex examination gloves was assessed with a biaxial flex-fatigue method where failure was detected electronically, and by live viral penetration testing performed according to a modified version of ASTM F1671-97a. When no change in barrier properties was detected during flex testing, no virus passage was found after viral challenge. Conversely, when a change in the barrier properties was indicated by the electrical signal, virus passage was found in 74% of the specimens. Flex-fatigue results indicated that unaged test specimens from powdered (PD) and powder-free (PF) nonchlorinated gloves had significantly longer fatigue lives than powder-free chlorinated (CL) gloves from the same manufacturer. Biaxial flexing of oven-aged glove specimens showed a marginal increase in fatigue life for the PF gloves, but no increase for the PD gloves. The fatigue life of the CL gloves was observed to increase significantly after oven aging. However, this appears to be due to a design feature of the test apparatus, wherein peak volume displacement of the worked specimen is held constant. An aging-induced change in the viscoelastic properties of the CL gloves-permanent deformation of the specimens early in the fatigue test-relieves the stress magnitude applied as the test progresses. Thus, permanent deformation acts as a confounding factor in measuring durability of latex gloves by fixed displacement flex-fatigue.